Home
Log in / Sign Up
    Private Messages   Advanced Search   Rules   New User Guide   FAQ   Advertise   Contact Us  
Forum -> Children's Health
UPDATE: Anyone else have a child who is a medical mystery?
1  2  Next



Post new topic   Reply to topic View latest: 24h 48h 72h

amother
Magenta


 

Post Mon, Dec 28 2015, 10:20 am
My daughter can not tolerate food. She is 14 months and on Neocate. She is 'allergic' to life. She reacts to foods, meds, soaps, detergents, heat, cold, crying, excited, eating.

I'm not looking for any medical input or advice. I just want to connect with other mothers out there whose children may be similar to my child. I'm having a really tough time dealing with the day-to-day with her. Anyone else have a child like this?

UPDATE: My daughter still has no diagnosis as of 3/30/2016. Need support.
Back to top

amother
Navy


 

Post Mon, Dec 28 2015, 10:27 am
Not the same situation but I have a SN daughter with no known cause even after doing extensive genetic testing. I live in fear of having another child like that. Everyday with her is soooo hard but we still Heart her of course Smile but I wouldn't survive having another like her.
Back to top

amother
Magenta


 

Post Mon, Dec 28 2015, 10:32 am
Thanks for posting. My baby is the cutest, happiest baby with the funniest clown-like personality. I can't help but love her to pieces.

I'm also terrified of having another child like her. I keep thinking, if I have one, why can't I have two? Don't think I can handle it, her reactions are scary sometimes, and I'm constantly taking her to different doctors trying to get a diagnosis.
Back to top

FranticFrummie




 
 
    
 

Post Mon, Dec 28 2015, 10:38 am
My daughter is adopted, and after years of going through all kinds of possible diagnoses, we finally found out she has Fragile X Syndrome.

Several years after DD was born, her birth mother got married and had a little boy, who is "allergic to life", like yours. You name a food, he's allergic. He's also allergic to a whole laundry list of every day items. I think the oddest one is books. The kid is literally allergic to paper. His parents had to get rid of every single book in their house, replace them on Kindle, and then move to a new house. They also had to get rid of all of their pets, and they vacuum and dust at least 3 times a day.

No one can come over to visit them, because no matter how organic and unscented all of your health and beauty products are, there will be something he could react to. If you have chapstick on your lips and you give him a kiss, he could be in the hospital for a week. shock

It's really hard on DD, because she wants to have a relationship with her half brother, and she can only be near him if she's outside in the fresh air, and washes her hands and face with a special soap first.

The boy is 5 now, slightly developmentally delayed, but very sweet. He goes to a private school with small classes, and his mom shadows him everywhere to make sure that nothing comes near him - you know - like a book, or another kid.

I can't even imagine how hard it must be to live like that, and you have my full sympathy.
Back to top

amother
Khaki


 

Post Mon, Dec 28 2015, 10:54 am
Hi. Yes, that sounds similar to my kids. Feel free to pm me if you wish.

Last edited by amother on Mon, Dec 28 2015, 12:17 pm; edited 1 time in total
Back to top

amother
Firebrick


 

Post Mon, Dec 28 2015, 11:07 am
Wow that must be so hard for all of you!
I didn't even know there was such a condition. I wish all of them a רפואה שלימה and they should grow out of it
Very
soon and you mothers should have the כח to deal with it. You should have lots of נחת from all of them 😊
Back to top

amother
Magenta


 

Post Mon, Dec 28 2015, 11:19 am
Quote:
Hi. Yes, that sounds similar to my kids. Feel free to pm me if you wish.


I don't want to pm, sorry. Can you post here?
Back to top

amother
Cobalt


 

Post Mon, Dec 28 2015, 11:30 am
Hugs. As you said you do not want any advice, I will say I do know someone with a child like yours. I see the struggle every day, but the child is improving as she gets older.
Back to top

amother
Lawngreen


 

Post Mon, Dec 28 2015, 11:32 am
I have a kid on the autistic spectrum with adhd. He can't tolerate any of the typical adhd meds- they make him anxious and even more impulsive and sometimes violent, and also OCD. Also, when he takes a new med for anything, it works amazingly for the first few weeks and then his body adjusts and the effect goes way down, sometimes to zero. So he's in a lower functioning environment tham he needs because we can't get this stuff under control, and not even the professionals know how to control it behaviorally because they're so used to being able to medicate it away...

Oh, and I also have a ds whose asthma is dramatically aggravated by scents. Anyone know if a fragrance free shampoo that actually works on oily hair?
Back to top

amother
Cerise


 

Post Mon, Dec 28 2015, 11:44 am
I work at a school for children with special needs, and while we don't have children exactly like your child, we have 2 students that don't tolerate any food, even formula. One bh was just diagnosed. Just want to let you know there is hope, and that there are others struggling. Did you have your child evaluated by a frum agency? Perhaps they can hook you up with someone IRL who is struggling with similar issues. Good luck and I hope you find a solution and diagnosis real soon. Hashem should give you the koach to go on.
Back to top

amother
Green


 

Post Mon, Dec 28 2015, 11:56 am
Same thing with my baby, trying different formulas, now on neocate seems to better but still suffering, either he is very happy or crying and screaming! We are going to take him to an allergist that hopefully will help Iyh!!
Back to top

amother
Khaki


 

Post Mon, Dec 28 2015, 12:16 pm
Sorry, but not when I've already gone not anonymous. You may want to look at the kids with food allergies website for online support or try to find a local support group through FARE. I think there may be one at Mt. Sinai if you are in the nyc area. Good luck.

Eta: I see I am able to switch my last reply to anon.

What I can say is it's very hard to find the right allergist. But once you do, things become more manageable. Depending on where you are located (if you want to share that), maybe someone might have a recommendation. One thing that I have found crucial to keep in mind is that my kids' identities are not their allergies. It is something that we have to manage and deal with, but it's not who they are. Hugs.
Back to top

amother
Taupe


 

Post Mon, Dec 28 2015, 12:34 pm
My child does not have anything like that but had a different kind of medical mystery so I know how hard it can be I was even once told by a Dr sorry I can't help you but if you ever figure out what's going on can you let me know. At this point she is doind great b"h we have some answers and some we never will know whys. Best advice I can give you is to make sure you have a great knowable and supportive pediatrician to guide you and over all family and friends support.
Back to top

amother
Olive


 

Post Mon, Dec 28 2015, 2:31 pm
I have a daughter who was a medical mystery for four years. She doesn't have health problems b"h, but major developmental issues. Bonei Olam has a genetic dept run by Mr. Chaim Jalas, who works with geneticist to discover mutations that can be responsible for any kind of health or developmental problem. Due to the fact that whole exsome sequencing test became cheaper recently, and that bonei olam has their own lab, he has a high success rate with figuring out which gene is responsible for a disorder and if it is hereditary. If he gets a few cases with the same problem it is easier to figure it out as well. I am posting this information for all of the mothers who are suffering from anxiety about having another child with the same problem. They might help you find some answers. And if it is hereditary, there are things to do that future kids should not be affected. I was scared, but I should have been.
Back to top

amother
Mauve


 

Post Mon, Dec 28 2015, 2:43 pm
Hugs. Look into mast cell activation syndrome. My son has eosinophilic esophagitis and was on neocate only for a little while. I found it so hard. I used to make him ices out of sugar water and food coloring just so he could have a treat. He's right now eating more but is still very restricted and I find it very hard.
Back to top

amother
Magenta


 

Post Mon, Dec 28 2015, 7:57 pm
amother wrote:
Hugs. As you said you do not want any advice, I will say I do know someone with a child like yours. I see the struggle every day, but the child is improving as she gets older.


THanks for posting. I appreciate it, I need ppl to tell me that there is home for improvement.
Back to top

amother
Magenta


 

Post Mon, Dec 28 2015, 7:59 pm
amother wrote:
Sorry, but not when I've already gone not anonymous. You may want to look at the kids with food allergies website for online support or try to find a local support group through FARE. I think there may be one at Mt. Sinai if you are in the nyc area. Good luck.

Eta: I see I am able to switch my last reply to anon.

What I can say is it's very hard to find the right allergist. But once you do, things become more manageable. Depending on where you are located (if you want to share that), maybe someone might have a recommendation. One thing that I have found crucial to keep in mind is that my kids' identities are not their allergies. It is something that we have to manage and deal with, but it's not who they are. Hugs.


I'm in the NY area. Do you have a particular allergist that you found helpful? We've seen a few already. I'm willing to travel.

Thanks for the bolded. I don't look at her as a problem kid but everyone else does and makes sure to remind me about it every time they see me. So I've stopped talking about it even though it is much harder for me this way. I wish others can see her for who she is and not just for all her 'issues'.
Back to top

amother
Magenta


 

Post Mon, Dec 28 2015, 8:00 pm
amother wrote:
I work at a school for children with special needs, and while we don't have children exactly like your child, we have 2 students that don't tolerate any food, even formula. One bh was just diagnosed. Just want to let you know there is hope, and that there are others struggling. Did you have your child evaluated by a frum agency? Perhaps they can hook you up with someone IRL who is struggling with similar issues. Good luck and I hope you find a solution and diagnosis real soon. Hashem should give you the koach to go on.


What was the diagnosis?

What do you mean, evaluated by a frum agency? I've spoken to Shuki Berman many times, if that is what you mean.
Back to top

amother
Magenta


 

Post Mon, Dec 28 2015, 8:04 pm
Olive amother, thanks for the referral to BO. I will look into it as I have a HUGE fear of having another child like this. I don't think I would be able to do it again.

amother wrote:
Hugs. Look into mast cell activation syndrome. My son has eosinophilic esophagitis and was on neocate only for a little while. I found it so hard. I used to make him ices out of sugar water and food coloring just so he could have a treat. He's right now eating more but is still very restricted and I find it very hard.


We've looked into MCAS, been seen by Dr. Maitland. She doesn't quite fit the profile for MCAD/S. How old was your child when diagnosed EE and what were his symptoms, if you don't mind my asking?
Back to top

amother
Lemon


 

Post Mon, Dec 28 2015, 8:21 pm
Hugs to you. It must be very hard.

Have you ever thought about contacting Dor Yeshurim? They might be able to point you to a doctor.
I do know one that is on the board who has helped people with genetic abnormalities. His name is Dr. Rubin.
Back to top
Page 1 of 2 1  2  Next Recent Topics




Post new topic   Reply to topic    Forum -> Children's Health

Related Topics Replies Last Post
Child Tooth Ache- Pediatric Dentist
by Bruria
2 Yesterday at 5:17 pm View last post
Podiatrist for ingrown toenail on child
by amother
1 Yesterday at 12:23 pm View last post
Medical billers- Changehealth outage
by amother
10 Yesterday at 5:27 am View last post
TIP for tutors: Update pg 2
by amother
21 Tue, Mar 26 2024, 6:49 pm View last post
If you successfully healed your child's gut
by amother
10 Mon, Mar 25 2024, 3:32 pm View last post