- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Parenting
I had a VERY emotional night last night =( LONG!!
I think I have been bottling things up inside for too long, in attempt to be the best mom to Jayden and a strong wife for my husband b/c when it comes down to Jayden's health and well being, my husband feeds off of my feelings. Well yesterday MH left for a 3 day business trip. The house went on the market yesterday as well and was already being shown by a realtor, so I packed up the dogs and Jayden and we went to the park. I had tons of phone calls to make concerning Jayden b/c now autism has been mentioned to me several times when discussing his multiple issues. Just for anyone who doesn't know, Jayden has had reflux, food sensitivities, chronic constipation, lost of language skills, sensory issues, and feeding issues. I'm sure I left something out, but since birth, he's had something wrong and as he gets older, things get worst and now he is said to exhibit autistic like behaviors and he has an appt to see a developmental pedi in July.
Anyway, last month he had an EGD (basically an upper GI) done by the GI to determine a cause for the feeding issues. The Dr found stomach ulcers and duodenitis (inflammation of the small intestine). The only recommendation from them was to continue prevacid and follow up with them in May. No reasons as to WHY my 2 yr old has ulcers and duodenitis, just cover it up like they'd been doing for 2 yrs. For me, that wasn't enough and it bothered me that he was going to start feeding therapy and we still didn't have an answer as to why his stomach is messed up, so I took matters into my own hands. I changed his diet to gluten Free and took him off Soy milk b/c it had never been confirmed that he outgrew his MSPI even though the GI told me to start giving him soy milk. Well about a week into the diet, my son miraculously started having regular BMs and they were no longer foul smelling. He also was no longer extremely irritable all day when he had a BM. I felt like the change was significant enough to completely change his diet, but of course I wanted to consult with the GI as well, especially since I had to eliminate Soy, which makes things so much harder since Jayden gets most of his fill from milk. Well the GI nurse caught the biggest attitude with me. She told me that the Dr will NOT advise me on the new diet b/c he did not recommend that I change Jayden's diet. So did it not matter that I saw marked improvement on the diet?? I was so pissed. I told the nurse, Well since I am not getting answers from Dr. N, then I have to do what is best for my child and if changing his diet helps him to feel better than that's what I am going to do! She told me we needed to schedule a follow up and that she would get back to me, of course she never did. I stayed strong until Jayden went to bed for the night. Then it was just me alone since DH is gone and oh boy did the flood gates open last night!! I think I let of months and months of frustrations. I cried and cried and my husband was texting me with bible verses to read to lift my spirits. I sat on my bedroom floor crying into my bible. It is so hard to fight for your child when it seems like no one wants to listen! I look at him and I feel like I've done wrong by not fighting harder. So I have to fight harder. I have to MAKE the Drs listen to me. So I gathered myself and this morning we went to Jayden's pediatrician and I told him all of my concerns. When I told him about the diet change, the first thing he said is that he wants Jayden to be tested for celiac disease. I'd asked the GI dr to test him for it and he told me that since Jayden has chronic constipation and not diarrhea, it's not celiac. Jayden's pediatrician disagrees and says that there are some cases that present themselves in constipation. I knew that b/c I did my research, but I didn't fight the GI dr on it 
He also thinks that Jayden still has not outgrown the MSPI. He supports the change in diet and told me to keep Jayden on the diet for now. He's switching our GI dr and will call us with an appt asap to see the new one to have Jayden tested for celiac disease and we will put him back on gluten prior to testing. As far as the EI therapies go, he said to continue with speech and OT but if I am not comfortable with feeding I can ask them to put that on hold b/c he does think there is something going on with the GI tract that needs to be resolved first.
I was able to breath a sigh of relief. Finally a Dr listened and understood my concerns. He agrees that I am an advocate for Jayden and I should do what I see is fit for his health as long as it is safe to do so. So I will continue to fight this system until we know for sure what exactly is wrong with my son and we can fix it! If you read this far, thanks so much and I'd appreciate any prayers if you are the praying type!
Nia, Mom to Jayden Michael, Born 12/04/06, Adopted 12/07/06
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
This discussion has been closed.
Re: I had a VERY emotional night last night =( LONG!!
"
Ethan {1.11.10} & Malia {12.28.06}
Wow. That's all I can say.
Your son is very lucky to have come to have a life with you as his mother. Even when someone tells you that you are wrong, just always know that if you don't stand up for him, nobody will, and you are never wrong in doing that.
I really hope that you can find a good doctor who will listen to you, and that you can find out what is wrong with him. I cannot imagine the stress that puts on you and your husband, and the pain and frustration your son has.
I'll definitely keep Jayden in my prayers!
Jayden is very, very lucky to have a mom like you. I hope you are able to find some answer with the new GI specialist.
Liam is 5!
OMG, I have to say that I 100% commend you. A lot of times doctors base every kid on the most popular diagnosis, some are afraid to look outside the box at the individual child.
I'm so happy you keep pushing, and keep digging to help your baby. He is the luckiest boy in the world to have you as a mother and your DH as a father. You are amazing.
You and Jayden are in my prayers!
Nia, I'm so sorry you're dealing with this.
Ethan had weird feeding issues that were ultimately diagnosed as duodenitis as well, so I have experience with this.
I think you need a new GI, who can look with fresh eyes. I'm no doctor, but it sounds like an endoscopy would be useful. I'd also urge you to look in my bio and follow the links to the info about eosinophilic disease and see if any of it rings true for Jayden. It can only be diagnosed properly with an endoscopy and biopsies. This is what they thought E had, but ultimately it was determined he didn't. But when they found his duodenitis and suspicious biopsy results, he was taken off ALL food immediately and put on a prescription hypoallergenic formula. The duodenitis cleared within two months.
GL.
I am seriously in tears just reading this. I don't know what I would do in your situation! I freak out if Gracie gets a diaper rash!
I'm so sorry you're going through this and I sincerely hope that these doctors get their crap together soon and find out what's wrong with your baby so they can treat him!
Kaden William 11/4/06 and Dawson Michael 6/30/10
Dawson's first birthday - at the zoo
I am so sorry for everything you are going thru. I know how hard it is and had a day like yours last week. I am currently fighting the public school to give my ds preschool services, which they say he does not need. He has had testing and sees a private OT...all the specialists say he needs integrated preschool services. This is just one issue in the many that I have fought. The only reason my ds got tested was because I called the neuropsyc. myself. His pediatrian wouldn't suggest anything. He also would not give him a flu shot because he did not consider him high risk...even though he had rsv as an infant.
I know it is hard. You have a long road ahead of you, but it sounds like you can do it. Jayden is so lucky that he has you to advocate for him. Keep up the good work.
I'm in tears reading your post.
You are an amazing mother and you are doing a great job!! Stay strong!
(((((HUGS)))))
Its good that you finally had a breakdown...dont deny your emotions. I'm glad you finally got someone to listen to you and validate your concerns.
I've had a few breakdowns about Michelle and amazingly I feel much better and more stronger in my resolve to be her best advocate.
Thanks for keeping ups updated
Not too many posts bring tears to my eyes, but this did.
The biggest gift that your little guy has ever received, and WILL ever receive, is you in his life. (whether he knows it or not)
Like others have said, do not kick yourself for things done or not done in the past. You learn, move on and try more until you find something that works!
You are a strong woman and a wonderful mother!!!
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
you can be strong IRL, and come here to vent- thats what we're here for!
you are an amazing wife and mother- you should be so proud.
if every doctor was ALWAYS 100% correct, then how would we all end up with different advice all the time? I think it is important to listen to docs, and seek other opinions-they can't know everything, and they need to be open to new ideas and technologies. Good for you for going with your instincts!!
Jayden is absolutely adorable, by the way.
(((hugs))) So sorry you are going through this. You are a great mother and your son is lucky to have you. My thoughts are with you.
Nia,
I could have written this post word for word about my son. He is 3 and a half and jsut this week we finally got a diagnosis that may be the start of something. He saw his 3rd allergist this week and was skin tested. He tested positive for dairy, soy, rice, oats, and almonds. We were floored!! We followed up with blood tests and we are hoping to hear back about those soon.
He had seen two previous allergists and they said even though he couldnt tolerate milk based or soy based formula as an infant they were confident he had outgrown the allergy. I guess they were wrong!
We had also been seeing a GI Dr for a long time due to reflux, chronic diarrhea and vomitting. All had been happening since birth. He kept saying that it was toddler diarrhea from juice. This was more than just from juice... But who am I to argue with a DR
We finally this fall began seeing a new GI Dr. He did an upper endoscopy and a colonoscopy and although I did not want him to undergo anestetia he found ulcers and areas of inflammation. We increased his Prevacid to twice a day and got an appt with the new allergist.
He is also in an intergrated preschool 5 mornings a week for speech and OT. He has had eraly intervention since 15 months and we are finally seeing an improvement. He has had tubes twice and contiunes with ear infections.
Life just sucks sometimes and I am truly sorry you are feeling this way. Believe me when I say I know EXACTLY how you feel!
Please email me if you ever have any questions or would like to just vent.
Good Luck and hang in there,
Heather hwilliams0417@gmaildotcom
And Elias Parker, Born 3.5 weeks early 12/20/2011
FINALLY!!! After 7 years of infertility!
Wow, you are one heck of a mom! Jayden is so lucky to have you. I am glad your pedi has you going to a new GI. I will be keeping you and your son in my prayers, please keep us updated.
And feel free to vent here any time. I can't even imagine how stressful your life must be right now.
Lots of (((((HUGS))))) to you!
My goodness girl! I am sorry to hear about all your troubles with your little one. Just remember he is a VERY lucky little boy to have parents as wonderful as two are. This may sound stalkerish, but I have been following your story because I am from NO as well. I know you have had troubles with J since birth. Keep up the great work with him you are doing a fantastic job.
Where are you moving to? Did you find a house somewhere else? If you and J need a playdate, let us know. We are always willing to meet new friends. You can PM me if you do not want to say everything on here...that is if I can figure out how to check my pm's. OR e-mail me.
kelli_girl_1 at yahoo.com
Keep your head up, you are a GREAT and very loving mother!
Kelli
Huge huge (((hugs)))
You're a rockstar mom and I am keeping you in my prayers. The celiac diagnosis was one of the best things that happened to my family.
I heard from someone once that when you find out your child has a disability or problem of any kind there is a mourning period where you sort of have to mourn the loss of the child you expected you had. That's what it sounds like you are going through.
I'm so sorry for all your frustrations and that the medical people aren't being more helpful.
vent here whenever...you don't have to be strong for us!
You, my friend are an inspiration.
((HUGS))
I think you are doing such a great job with Jayden. He is so lucky to have you. Did you watch Oprah yesterday? It was about medical mistakes, and one of the key messages was that you have to be an advocate for yourself. I think you are really doing that for Jayden.
Just out of curiousity, why does he have to go back to gluten to take the test for celiac disease? Annalise was tested for celiac disease at her 6 month appointment. (MIL has the disease, and I don't think they know if it's hereditary.) She hadn't even started solids at that point.
Charlotte Ella 07.16.10
Emmeline Grace 03.27.13
You're little boy is lucky to have you as a mom. You make sure and keep fighting for him and MAKE people listen. In my profession I've encountered dr's who think that b/c they are a doctor they know better based on facts, books, etc, and don't know the patient they are dealing with. But, when it comes to my child, I won't keep my mouth shut. I'm glad your pedi is on board with you and is helping you switch GI. that guy and his nurse need a course in compassion and bedside manner. You know your child and if you are seeing improvement by switching his milk - then that has to mean something.