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?
Previous  1  2



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

amother
Plum


 

Post Tue, Dec 29 2015, 12:14 am
To the person who asked about shampoo.. My kids have never used shampoo. Just water. Apparently if you have used shampoo it takes a few weeks of oiliness and then you can just use water all is good.
Google it
Back to top

amother
Mauve


 

Post Tue, Dec 29 2015, 12:17 am
EE is much more of a gastro disorder/allergy and not an ige (regular histamine related) allergy. Although my son has plenty of those as well. For some reason quite a few highly allergic children have ee as well. ee would not explain the allergies to temperature, or detergents or materials etc. My sons ee symptoms were random vomiting, poor growth and other gastro disorders. The ee is in addition to all of his crazy food allergies. I don't think ee really fits your child. Exploding anger Twisted Evil
Back to top

amother
Magenta


 

Post Tue, Dec 29 2015, 1:06 am
amother wrote:
EE is much more of a gastro disorder/allergy and not an ige (regular histamine related) allergy. Although my son has plenty of those as well. For some reason quite a few highly allergic children have ee as well. ee would not explain the allergies to temperature, or detergents or materials etc. My sons ee symptoms were random vomiting, poor growth and other gastro disorders. The ee is in addition to all of his crazy food allergies. I don't think ee really fits your child. Exploding anger Twisted Evil


I have a 5 year old who is very very allergic and is being scoped in a few weeks for possible EE. One doctor thinks my "problem" child may have EG (eosiniphilic gastritis) too, in addition to whatever other allergy issues she has. A lot of her symptoms are GI related. Thanks for posting.
Back to top

amother
Magenta


 

Post Tue, Dec 29 2015, 1:07 am
amother wrote:
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 😊


Thank you a million times over. This is what I need to hear Smile
Back to top

amother
Khaki


 

Post Tue, Dec 29 2015, 8:39 pm
I guess I am Khaki. Smile The doctor you mentioned is one I would have mentioned. Someone told me recently that Dr. Joyce Yu at Columbia seems good regarding managing very reactive patients, although I think her focus is perhaps more immunodeficiency from what I have been told. There's the group at Mt. Sinai, which I assume you have probably been to already--Dr. Nowak-Wegrzyn is one who was recommended to us by an allergist friend (we did not end up seeing her though). When we saw a different doctor there, a few years back, I found them to be very focused on testing (which isn't helpful for my kids for the most part). This may have changed though, as I am definitely hearing more about how the allergy tests are not the be all/end all and are just pieces of information.

Outside of the NYC area, Brigham & Women's (Drs. Castells and Akin) are the ones to go to for mast cell activation evaluation, but hard to get into. For pediatrics, they are kind of the lead/research experts at the moment, but I think they focus more on forms of mastocytosis. (Has she been screened for that, at least tryptase level, etc.?)

National Jewish in Denver (might be children's hospital now?), at least as of a couple of years ago, had an excellent and comprehensive allergy evaluation program. You go there for a few days to a week or so and they test and challenge, etc., and I believe the GI and allergy groups there coordinate, so you can kind of get everything looked at simultaneously. It's been awhile since I have read about it though, and we did not go there ourselves. From my understanding, this program might be better for patients for whom the IgE allergy tests provide some information, but it might be worth calling them or asking your doctor to.

My kids have a working diagnosis of mcas. There aren't really good tests for it yet; it's more a clinical diagnosis of exclusion and response to the medications used (which are basically allergy medicines, but a lot more of them than average). They have been scoped multiple times looking for EoE and we have not found it even though they were text book symptomatic for it. With one, we did the new-ish gene assay test and that confirmed that child does not have EoE (unless we are in the very small false negative %). And so it goes. If you are scoping for EoE, I would request that test as well--or at least ask your GI about it--they just need a piece of the biopsy tissue (and can even use old biopsies if need be). It's an expensive test, but some insurance companies will cover it already. My kids get a combination of the immediate reaction symptoms (like IgE) and also the more delayed/GI symptoms (like EoE). I tend to think of it these days as "super bad allergies, all."

Does your daughter take any medicines on a daily basis? My kids take a lot of medicines right now, many antihistamines, etc. It usually has to be adjusted a few times a year, depending on the season and how they are doing--sometimes we can reduce a bit, other times we have to increase. They were able to start taking one of the mast cell stabilizers and it seems to be helping a lot; one child has stopped reacting airborne to a very common food (and consequently has, B"H, gained so much freedom). The medicines help keep things in a more manageable range; not asymptomatic, but not as many severe reactions as there used to be (at one time, it was a few times a week).

After several years of this, what I can offer is that being pragmatic in your approach will likely help you to cope with it. At some point we realized that, even more than an ironclad diagnosis (and honestly, given how medicine is always learning new things I don't think that is even possible), we needed a treatment plan. A way to manage and hopefully, incrementally, improve things. Once we ruled out everything that could be, that's kind of where we ended up. So, maybe more than a doctor who can give a for sure diagnosis, we need doctors who will be our partners and work with us, over the long-term if necessary. A doctor who is interested and wants to help, even if he or she does not have all the answers on day one.

As to how others respond, big hugs. I know it well. I actively tell people that the allergy/medical stuff is something that we try to treat like background noise (okay, sometimes it is very loud and distressing noise). The adults need to manage it (and kids as well, as they get older and more self-responsible). It's not the totality of life and it is not who the kids are. Our goal is for it to fade to the background and be managed, but not be the focus all the time. People need to hear that. I don't think that most people are trying to be insensitive, but more that they just don't understand and perhaps lack the ability to empathize as much as we might expect/like. It can be hard to understand if you have not experienced it. These kids are all amazing people. Hang in there. Sorry that got so long!
Back to top

amother
Magenta


 

Post Wed, Dec 30 2015, 10:26 pm
amother wrote:
I guess I am Khaki. Smile The doctor you mentioned is one I would have mentioned. Someone told me recently that Dr. Joyce Yu at Columbia seems good regarding managing very reactive patients, although I think her focus is perhaps more immunodeficiency from what I have been told. There's the group at Mt. Sinai, which I assume you have probably been to already--Dr. Nowak-Wegrzyn is one who was recommended to us by an allergist friend (we did not end up seeing her though). When we saw a different doctor there, a few years back, I found them to be very focused on testing (which isn't helpful for my kids for the most part). This may have changed though, as I am definitely hearing more about how the allergy tests are not the be all/end all and are just pieces of information.

Outside of the NYC area, Brigham & Women's (Drs. Castells and Akin) are the ones to go to for mast cell activation evaluation, but hard to get into. For pediatrics, they are kind of the lead/research experts at the moment, but I think they focus more on forms of mastocytosis. (Has she been screened for that, at least tryptase level, etc.?)

National Jewish in Denver (might be children's hospital now?), at least as of a couple of years ago, had an excellent and comprehensive allergy evaluation program. You go there for a few days to a week or so and they test and challenge, etc., and I believe the GI and allergy groups there coordinate, so you can kind of get everything looked at simultaneously. It's been awhile since I have read about it though, and we did not go there ourselves. From my understanding, this program might be better for patients for whom the IgE allergy tests provide some information, but it might be worth calling them or asking your doctor to.

My kids have a working diagnosis of mcas. There aren't really good tests for it yet; it's more a clinical diagnosis of exclusion and response to the medications used (which are basically allergy medicines, but a lot more of them than average). They have been scoped multiple times looking for EoE and we have not found it even though they were text book symptomatic for it. With one, we did the new-ish gene assay test and that confirmed that child does not have EoE (unless we are in the very small false negative %). And so it goes. If you are scoping for EoE, I would request that test as well--or at least ask your GI about it--they just need a piece of the biopsy tissue (and can even use old biopsies if need be). It's an expensive test, but some insurance companies will cover it already. My kids get a combination of the immediate reaction symptoms (like IgE) and also the more delayed/GI symptoms (like EoE). I tend to think of it these days as "super bad allergies, all."

Does your daughter take any medicines on a daily basis? My kids take a lot of medicines right now, many antihistamines, etc. It usually has to be adjusted a few times a year, depending on the season and how they are doing--sometimes we can reduce a bit, other times we have to increase. They were able to start taking one of the mast cell stabilizers and it seems to be helping a lot; one child has stopped reacting airborne to a very common food (and consequently has, B"H, gained so much freedom). The medicines help keep things in a more manageable range; not asymptomatic, but not as many severe reactions as there used to be (at one time, it was a few times a week).

After several years of this, what I can offer is that being pragmatic in your approach will likely help you to cope with it. At some point we realized that, even more than an ironclad diagnosis (and honestly, given how medicine is always learning new things I don't think that is even possible), we needed a treatment plan. A way to manage and hopefully, incrementally, improve things. Once we ruled out everything that could be, that's kind of where we ended up. So, maybe more than a doctor who can give a for sure diagnosis, we need doctors who will be our partners and work with us, over the long-term if necessary. A doctor who is interested and wants to help, even if he or she does not have all the answers on day one.

As to how others respond, big hugs. I know it well. I actively tell people that the allergy/medical stuff is something that we try to treat like background noise (okay, sometimes it is very loud and distressing noise). The adults need to manage it (and kids as well, as they get older and more self-responsible). It's not the totality of life and it is not who the kids are. Our goal is for it to fade to the background and be managed, but not be the focus all the time. People need to hear that. I don't think that most people are trying to be insensitive, but more that they just don't understand and perhaps lack the ability to empathize as much as we might expect/like. It can be hard to understand if you have not experienced it. These kids are all amazing people. Hang in there. Sorry that got so long!


Wow! Thanks for the detailed post. I'm so sorry for all that you've been through. It is comforting for me to know that I'm not the only one dealing with something like this.

I'm looking into Denver and Cincinnati, one of those is going to be our last stop. We're switching to new GI now. If we don't make progress with this then we are headed to one of those. But I really hope we have answers before we get there:(

Can you email me at medicalmysterybaby@gmail.com ? I'd love to chat more:) Thanks!
Back to top

amother
Green


 

Post Thu, Dec 31 2015, 10:55 am
Hi im Green:),posted earlier-sorry its long..Going through a similar situation with my 9 month baby but she's not eating very much real food yet so its a little easier, she's on Neocate (and I'm nursing her) after she reacted to Allimentum, she's been FTT since birth, bad reflux that causes her to stop breathing - lots of hospital stays and many different doctors for this and a few other medical issues including surgeries and this is my first kid! She also has eczema and itchy eyes so we were told to go to an allergist and a GI to find out about EoE.So far we have been to Doctor Demirdag at Columbia who works as a team with the GI (Doctor Lusman). She did a scratch test and blood work, scratch test showed an egg allergy.We are waiting to hear results still. She said that it sounds like EoE and the Gi will have to do a scope
How does the scope work? I'm a little nervous about it...The baby is put under anesthesia,right? Than this will be her 4th time having anesthesia!
I guess I'm also looking for Chizuk. ..I just try to take one (hopefully good) day at a time and remember that Hashem has a plan even if we are unsure what it is!I also try to really enjoy my time with my baby when she is happy!And talking to other Moms with similar issues always helps!!!
Good luck Magenta!!!!
Back to top

amother
Khaki


 

Post Thu, Dec 31 2015, 6:00 pm
Magenta,
You definitely are not alone. While it's not super-common (thankfully), there are more people that you'd think. I'm sorry, but I am not so comfortable with one-sided anonymity and do not really want to start a separate email account. I am also on the allergy forum I mentioned earlier (same sn if you remember it), if you wanted to reach me that way. And, of course, if you want to pm me here, I am not going to go sharing your sn with anyone.

Green,
So sorry that your baby has had to have so many procedures. A scope is a pretty quick one; in my experience the actual procedure takes about 15-20 minutes max, longer with the waking up time. We have done all of our kids' scopes at Columbia. Their anesthesia team is very good, especially the chief. If you have any concerns at all that you want to discuss, I would request a pre-consultation--one of the anesthesia team will call you a few days before the scope and go over any medical issues, including allergies. If you are suspecting an egg allergy, I would ask your allergist in advance whether she thinks anesthesia needs to take that into account as some of the medicines used contain egg. And I would of course tell the anesthesiologist the day of anyway. The doctor you talk to on the phone may or may not be the same one who actually does your child's anesthesia.

Also, even though they have information in the electronic medical records, anything important I would bring with you on a printed out sheet that you can give them a copy of. I always do this and it has come in handy. I was surprised at the information they did not have on hand easily.

They usually have the youngest kids get scoped first in the queue, so you might have a very early morning. They have you take the child back to the procedure room/OR awake, then they put on a mask with medicine in it to make them sleepy. After they are out, the parents have to leave the procedure room/OR and go to the waiting room. The scope involves the doctor sliding a small tube with a light on it down the esophagus--they can get visuals and they also take small biopsies. It's important that they take enough of them, and from different areas as EoE can be "patchy." Then the doctor comes to tell you that the scope is done, may mention what was visually noted (not always so useful re EoE--you need the pathology report). Then you wait for a nurse to come tell you the child is awake, at which point you can go meet her in the recovery area. Also, they usually want the kids to eat/drink something before they will discharge them, so make sure to bring something with you in case they don't have something that is okay/safe. The pathology reports can take a little while, up to a week is the longest we have had to wait, I think.

Also, if you end up wanting to get another opinion, Dr. Chehade at Mt. Sinai specializes in EoE. She told me that they can also have the pathology slides re-read there if need be. Probably that will not come up, but sometimes results come back that aren't clear one way or the other and a second opinion can be helpful (we saw her for that purpose).

If you have not looked at it already, the website for the American Partnership for Eosinophilic Disorders has a lot of information, including a library of videos of leading doctors discussing aspects of the condition: apfed.org Best wishes.

I hope all of you can get answers/treatment plans soon.
Back to top

amother
Mauve


 

Post Thu, Dec 31 2015, 7:28 pm
khaki amother really gave a nice rundown on the scope procedure. By my son's first one, I was all nervous but we have done several since his eoe diagnosis and they really are very quick and nothing to worry about. The procedure is shorter than the time spent waiting for them to wake up. Also at nine months old it's fairly easy to give them anaesthesia. My son is a few years older and sometimes fights the anesthesiologist since he knows what's coming.
Personally we had a really bad experience with Dr chehade. Unfortunately, she is the only EOE expert in the ny area. We use a different Gi who is not considered an eoe expert but he is much more pleasant to deal with. I found that his approach took my sons quality of life into account much more than Dr. chehades.

Hatzlacha it's a real relief to have a correct diagnosis and know whts causing all of the issues.
Back to top

amother
Green


 

Post Fri, Jan 01 2016, 10:55 am
Thank you so much to Khaki and Mauve amothers! I really appreciated your time to answer me at length.Your replies were both so very helpful!
Back to top

amother
Magenta


 

Post Wed, Mar 30 2016, 12:39 am
OP here, my daughter was scoped. Nothing doing. She appears to be the picture of good health.

WHAT IS WRONG WITH HER?? I am having such heartache. I need support right now.
Back to top

FranticFrummie




 
 
    
 

Post Wed, Mar 30 2016, 1:10 am
OP, I am so sorry to hear that you don't have any answers yet. I can only imagine your frustration.

Have you been to a geneticist yet? I would push for a full genome sequencing at this point. It will be expensive, and your insurance will fight you on it, but IMHO that might be your best bet on getting some real answers.
Back to top

amother
Purple


 

Post Wed, Mar 30 2016, 3:46 am
Just putting it out there in case it helps anyone...look into Bio-resonance, but if you decide to go for it make sure you use a fully qualified practitioner! Hatzlocho to you all...
Back to top

amother
Ecru


 

Post Wed, Mar 30 2016, 7:38 am
Would u go to a kinesiologist?
Back to top

amother
Wine


 

Post Wed, Mar 30 2016, 8:26 am
amother wrote:
Would u go to a kinesiologist?



you should go to one.

Or an alternative Dr., Chinese medicine, energy work, ect.
It's a shame not to try any of the fabulous suggestions above. You don't have to stop what your'e doing, do everything else mentioned in this post, plus this.
Back to top
Page 2 of 2 Previous  1  2 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 8:17 pm View last post
Podiatrist for ingrown toenail on child
by amother
1 Yesterday at 3:23 pm View last post
Medical billers- Changehealth outage
by amother
10 Yesterday at 8:27 am View last post
TIP for tutors: Update pg 2
by amother
21 Tue, Mar 26 2024, 9:49 pm View last post
If you successfully healed your child's gut
by amother
10 Mon, Mar 25 2024, 6:32 pm View last post