|Feb 02, 2009|
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Anyone ever feel likeDoes anyone ever feel like the docs keep putting you off hoping that your child will outgrow whatever it is that is going on or that you will grow tired and weary and quite bothering them?
As many of you know Adriane has been referred to NJ in Denver CO for an allergy workup. That was back in Sept. or Oct. and this is being put on hold for her other problems (GI, Cardio, and Neuro). My husband's aunt has many medical contacts in St. Louis and got us a consult with the head of diagnostics in St. Louis Children's hospital to see if there is a common thread or missing piece or something behind all of A's symptoms. That started on New Year's eve and by Jan. 2nd I had already requested all her records be sent to St. Louis. The docs in St. Louis got her records about 12 days ago. I asked that I be contacted when they got them so I could stop bugging my ped office about sending them. They said that they were going to look over them and get back with me on whether they feel they can help her. 12 days later and nothing. I haven't heard anything from anyone. Granted A has had two of the best weeks she has ever had. Well, while on food anyway. She is eating pretty well, her reflux meds are doing their job, we have been sleeping, thank God! It is crazy! Don't get me wrong I love this but I am kind of waiting for the other shoe to drop. She has had several viral infections that in turn really flare her asthma and seizures but they haven't even been as bad.
I thank God everyday that I have her. I also thank him again on the days that we only do maintenance meds and no additional meds for her. I found myself saying today that it looks like we made it through without any major hospital stays this winter. Then realized it is just unseasonably warm right now and winter isn't over. Then I wanted to kick myself becuase I am always afraid of jinxing myself. We spent over three weeks in the hospital at this time last year. We almost lost her and I still have dreams about holding her and her seizing and not breathing while turning blue. God somehow lets us forget the pain of labor with our children but I still remember that pain so vividly.
I am rambling now but I am just feeling as if all these new docs were just a way of keeping us appeased. Does it really take almost two weeks to figure out if you can help a child who is sick? We are still waiting on the optometrist to call and make an appt to check out her eye. The left eye and left foot still turn in mainly when she is tired. The doc thinks it is a muscular problem that can be solved with therapy but I have a feeling it is from her seizures since most of her seizure activity is located in her right brain. Thanks for reading and all the support that you ladies have given me. -Amanda
|Feb 03, 2009|
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
|I often feel placated, but then Isobel's issues aren't as severe. Hope you're able to get real help soon. |
|Feb 03, 2009|
mom to 4 kids with probable
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
Connective Tissue Disorder,
Visceral Hyperalgesia, and more
I used to feel that way a lot when Brent was a young baby before he was diagnosed with some of his issues, but not so much anymore as we are very lucky and have hit the jackpot with exceptionally caring specialists, which seems to be a rarity.
I can totally feel your frustration though in terms of wanting your child to feel better, as I am right there too. Nothing is working for my child to make him better despite having great docs, they dont know what to do for him because nothing that normally works works for him.And I cant comprehend why places take 2 to 3 months just to review records of a sick kid(which is how long I am having to wait, his records were faxed in Nov and all records in by mid Dec!)12 days doesnt sound too too bad yet to me, though I know it feels like forever. Try to hang in there, I will keep you in my prayers(((hugs)))
|Feb 03, 2009|
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
|I know you are frustrated. It is so hard to have a sick child and it seems like a waiting game with the health care professionals.|
I hope the new docs will help you and give you some answers. Stay strong and keep your faith.
|Feb 06, 2009|
(Maria)Mommy of 2 beautiful boys
Raymond(3) Severe Trachialmalasia, very mild Cerebral Palsy, and Reflux. Currently only unsing neb and doing well w/o Prevacid!
William(2) Reflux, MSPI, severe food/seasonal/environmental allergies. Currently on Prevacid, Zyrtec, and very limited diet.
Picture:William just turned 2!
I totally feel we are pushed off to the side, in hopes that our littles ones will get better on their own...and then of course the doc will go "See, we fixed it." now pay me.lol Its not funny, but ironic.
Many hugs to you!!!!!! I hear it gets better. ;o)||Check with your