Frustrated and overwhelmed

[kayrosek]

For the past three years my DD12 has been dealing with multiple unexplained symptoms. We've gotten a few diagnosis': chronic migraines (around 3 a wk), acid reflux, chronic constipation, etc but mostly we have alot of qestions and no answers. She's tiny (around 50 lbs) and has a really hard time gaining weight, is constantly complaining of back/neck pain and body aches/joint pain, catches every bug around and holds on to it, has horrible doubled over, screaming stomach pains. W'eve been told these could be adominal migraines (all the pain of a migrain localized in her abdomen). We have spent tons of time in the ER and different Drs. offices and still no idea why she's so sick. She misses too much school to stay with the class so now she's homeschooled. I just don't know what to do. The Drs seem to blow this off as all in her head but I know theres something wrong and it is so horrible and frustrating to not know what it is or how to help. No amount of medication or diet changes have even made a dent in her discomfort. What do I do now? Also thoughts and payers would be welcome.

 

[wdwmom0f3]

I would get her to the best hospital around and change Dr's. If your DD is 12 and only weighs 50 pounds, there is something bad wrong. She is way, WAY under weight. I wouldn't stop until I had some answers.

Saying a prayer for your DD. I hope she is better soon.

 

[pamickey]

You don't list where you're from, but hopefully, you are near a large city that has a teaching hospital. There are some really excellent hospitals attached to universities or some childrens hospitals that are the best in the country. You'll probably need a referral from your family doctor to get an appointment, but they may take you without one if you can't get your doctor to agree.

Good luck, I hope everything works out for your daughter!

Terri

 

[TaraPA]

Hi Kayrosek and welcome. What your DD is going through sounds like what my DS13 is in a study for, by his Pediatric Gastroenterologist. Does she ever have vomiting that's not from a stomach bug? DS13 has had reflux since birth that hasn't gotten better, so he was finally referred to a great Ped Gastroenterologist. One of my concerns was that DS13 tends to vomit frequently, and 90% of the time it's a once-and-done episode, not from a virus. While he did confirm that he does have moderate reflux (and a hiatal hernia but that's a non-issue right now), he started asking questions about other habits & symptoms. He said that kids of small stature (DS13 is 75 lbs & the shortest in his class), who suffer from migraines, who have a maternal line history of migraines & have reflux, can suffer from something called cyclic or episodic vomiting, that is actually an effect of the migraines, not the reflux. He did test him to rule out Celiac Disease & something else called a Carnitine Deficiency (which causes body & joint aches like your DD). He's on omaperozole daily right now for the reflux & will start him on cyproheptadine shortly, which is supposed to help with the migraines & cyclic vomiting. Cyproheptadine is actually an antihistamine (and used as an appetite stimulant in the eldery), so he can't start it until wrestling season is over, because he has to maintain his weight for that (he will gain weight on the meds).

In any event, I didn't mean to ramble, but your DD seems to have several of the same symptoms my DS has. No matter what is wrong, you must be terribly frustrated. I don't have any advice for you, but you can come here to vent any time you need to, we are all good listeners!

 

[kayrosek]

I would get her to the best hospital around and change Dr's. If your DD is 12 and only weighs 50 pounds, there is something bad wrong. She is way, WAY under weight. I wouldn't stop until I had some answers.

Saying a prayer for your DD. I hope she is better soon.

Her last weight was actually 55lbs. she bounces around a bit but she hasen't really gained and kept any weight on in thee years and shes never hit 60 lbs.
Thanks for the prayers. I think we need alot of those right now. Mostly I am praying for answers.

You don't list where you're from, but hopefully, you are near a large city that has a teaching hospital. There are some really excellent hospitals attached to universities or some childrens hospitals that are the best in the country. You'll probably need a referral from your family doctor to get an appointment, but they may take you without one if you can't get your doctor to agree.

Good luck, I hope everything works out for your daughter!

Terri

Thanks for the hug. I needed that. We are close to a big cty and my daugter has been under the care of drs at the childrens hospital but they haven't gotten very far. We have a new doctor who I hope will delve deeper bu if he dosent find some answers soon I like the idea of trying to get her in with the nearby teaching hospital. Thanks for that idea.

Hi Kayrosek and welcome. What your DD is going through sounds like what my DS13 is in a study for, by his Pediatric Gastroenterologist. Does she ever have vomiting that's not from a stomach bug? DS13 has had reflux since birth that hasn't gotten better, so he was finally referred to a great Ped Gastroenterologist. One of my concerns was that DS13 tends to vomit frequently, and 90% of the time it's a once-and-done episode, not from a virus. While he did confirm that he does have moderate reflux (and a hiatal hernia but that's a non-issue right now), he started asking questions about other habits & symptoms. He said that kids of small stature (DS13 is 75 lbs & the shortest in his class), who suffer from migraines, who have a maternal line history of migraines & have reflux, can suffer from something called cyclic or episodic vomiting, that is actually an effect of the migraines, not the reflux. He did test him to rule out Celiac Disease & something else called a Carnitine Deficiency (which causes body & joint aches like your DD). He's on omaperozole daily right now for the reflux & will start him on cyproheptadine shortly, which is supposed to help with the migraines & cyclic vomiting. Cyproheptadine is actually an antihistamine (and used as an appetite stimulant in the eldery), so he can't start it until wrestling season is over, because he has to maintain his weight for that (he will gain weight on the meds).

In any event, I didn't mean to ramble, but your DD seems to have several of the same symptoms my DS has. No matter what is wrong, you must be terribly frustrated. I don't have any advice for you, but you can come here to vent any time you need to, we are all good listeners!

Don't wory your not rambling I appreciate any and all ideas. The big difference I see between my DD and your DS is that my DD hardly ever vomits. She never really has much. Not even with the stomach flu. Thank you so much for your ideas though I realy apprecite them. Truthfully sometimes feel like if I was asking the right qestions we would get better answers So any and everything I can ask the Drs about is welcomed. My son was tested for Celiac dieasease but I don't think DD has been so I will ask the dr about that and the other thing you've mentioned. At this point I want them to test like crazy and just find me the answer so we can help her. I'm tired of hearimg wait and see how she is next appt or after taking her off soda or whatever. Thanks for listening it's nice to be able to rant.

 

[mommasita]

to you.

I would personally not stop asking for answers, referrals to specialists, etc. Get a 2nd, 3rd, 4th opinion.

When it is our children it is so difficult. I have not been where you are exactly, but in similar situations, and the frustration and the feeling like we are not helping, are very overwhelming. You are helping

Please know you are more than welcome here any time. We are a great bunch of people, who are very kind and caring.

You are in my thoughts and prayers. Please give us an update when you can.

 

[quasar4legs]

I am sorry that your daughter is so unwell, it must be very difficult for your family.

Have you considered seeing an allergist? Reading your post made me wonder if perhaps your daughter has food intolerances that cause her symptoms.

I'm in australia but one of our large teaching hospitals (Royal Prince Alfred) in Sydney has an allergy clinic that have supervised elimination diets to see if certain foods, natural food chemicals, preservatives, salicylates, amines etc have an effect of specific health problems.

Food Intolerances can contribute to things like headaches, migraines, reflux, fatigue, bowel irritation and so on. There is no test for food intolerance like there is for allergy so a structured elimination diet is the only option to identify the food causing the issues.

You might be interested to google a website called the 'food intolerance network' which is run by Sue Dengate and is based on the research by the doctors at RPA Hospital. I believe on her site there is a link to a USA support forum that might be helpful.

The hospital allergy department has some basic information on their website that might be helpful.

I hope you find something that helps your daughter, it must be so distressing to watch your precious child be unwell

Quasar

 

[kayrosek]

to you.

I would personally not stop asking for answers, referrals to specialists, etc. Get a 2nd, 3rd, 4th opinion.

When it is our children it is so difficult. I have not been where you are exactly, but in similar situations, and the frustration and the feeling like we are not helping, are very overwhelming. You are helping

Please know you are more than welcome here any time. We are a great bunch of people, who are very kind and caring.

You are in my thoughts and prayers. Please give us an update when you can.

The thoughts prayers and hugs are very appreciated as is the ability to have some place to come and express my frustrations.

I am sorry that your daughter is so unwell, it must be very difficult for your family.

Have you considered seeing an allergist? Reading your post made me wonder if perhaps your daughter has food intolerances that cause her symptoms.

I'm in australia but one of our large teaching hospitals (Royal Prince Alfred) in Sydney has an allergy clinic that have supervised elimination diets to see if certain foods, natural food chemicals, preservatives, salicylates, amines etc have an effect of specific health problems.

Food Intolerances can contribute to things like headaches, migraines, reflux, fatigue, bowel irritation and so on. There is no test for food intolerance like there is for allergy so a structured elimination diet is the only option to identify the food causing the issues.

You might be interested to google a website called the 'food intolerance network' which is run by Sue Dengate and is based on the research by the doctors at RPA Hospital. I believe on her site there is a link to a USA support forum that might be helpful.

The hospital allergy department has some basic information on their website that might be helpful.

I hope you find something that helps your daughter, it must be so distressing to watch your precious child be unwell


Quasar

Thank you so much for your detailed post I will check out the website you suggseted. Allergies or intolerances are something the new Dr. wants to explore so we shall see. I am very familiar with food intolerances as my younger son had intolerances to all but a very few foods for the first several years of his life. Gradually he was able to tolerate more. In DD's case she has had very few problems with foods for most of her life so since it diden't present like her brothers (present from birth) I wasen't really thinking about that option. She always seemed quite healthy until the last few years but I geuss she could have developed new allergies or intolerances or whatever. It is definatley something to explore and again I really appreciate your ideas.

 

[KPeveler]

Have you ever thought of seeing a geneticist? So many of the more rare GI problems don't show up til adolescence, or are connected to other things that are genetic. My genetic problem really did not show serious symptoms til I was 13. And I had achey joints, headaches, constant neck aches, and tummy troubles. turns out I had Ehlers Danlos Syndrome, which can cause all these things (we are not sure how the tummy troubles connected, but it turns out they were caused by a neuro problem connected to the EDS).

I am not saying I think your DD has EDS, but no one noticed how these things were connected til I was seen by a geneticist.

P.S. My type of EDS is the Hypermobility Type.

 

[kayrosek]

Thanks again everybody for your comments. Just a quick update we went to see DD's new doctor yesterday and he is planning on having her tested for food allergies. He want's me to decide between a test for 96 common foods or a test for over 180 foods. I am leaning towards the larger one as 30 of the foods that are not on the smaller list are foods that are prevalent in our diet or favorite foods of DD's. The only problem is that we don't have insurance that will cover the testing, but if it can give us a clue as to what is wrong with DD then the out of pocket cost (even for the larger, more expensive test) will certainly be worth it.

 

[brat]

praying you find a helpful answer soon! With our food coming from around the world parasites could be the cause. As a kid I lived in 3rd world countries and picked-up a nasty parasitic infection that caused simular symtoms.Treatment for the parasites got rid of all the symtoms except the migraines.They are not as bad as they had been. The stomach pain of parasites was worse than when I had abcess teeth or migraines. Praying your DD gets relief soon.

 

[jcano]

Don't know what has been tested for, but from a Mom with 2 Celiac kids, it sounds like classic Celiac symptoms. Has she been tested or done a gluten-free trial? Do not go off gluten if you intend to have her tested. The tests are only accurate if gluten is being consumed. We've had friends who did a gluten-free trial and felt great only to have to go back to eating it so they could do the medical tests.
It is no fun to know something is wrong and not know what. BTDT (((hugs)))

 

[eternaldisneyfan]

Has she had a test to see how fast stuff moves through her gut (gastric emptying)? I have severe gastroperesis (paralyzed stomach) where my stomach muscles don't contract to move food down and through the gut. This caused problems maintaining weight, nausea, bloating, occasional vomiting. Low blood sugar can occur and will give you a bad headache and energy problems.

You can bypass the stomach with a J-tube which feeds formula into the jejunum. Especially severe cases may need hyperalimentation (TPN) which is IV nutrition.

I would get a gastric emptying study to check for delayed gastric emptying/gastroperesis. Reglan is a medicine that can stimulate the muscles to contract. Hope you can figure things out.

 

[cewilkes]

Don't know what has been tested for, but from a Mom with 2 Celiac kids, it sounds like classic Celiac symptoms. Has she been tested or done a gluten-free trial? Do not go off gluten if you intend to have her tested. The tests are only accurate if gluten is being consumed. We've had friends who did a gluten-free trial and felt great only to have to go back to eating it so they could do the medical tests.
It is no fun to know something is wrong and not know what. BTDT (((hugs)))

I am Celiac also and the symptoms do sound familiar. I hope that the doctor figures it out soon! Be aggressive - when I was little I wasn't diagnosed until my mum put me on an elimination diet and figured it out herself (and then yes, she had to watch me get sick again in order to have it tested at the hospital).

Keeping your little girl in my thoughts. If it is Celiac disease you should find it an easy fix.

 

[honeymom]

Has she had an endoscopy?

 

[honeymom]

Has she had an endoscopy?

 

[amykathleen2005]

For the past three years my DD12 has been dealing with multiple unexplained symptoms. We've gotten a few diagnosis': chronic migraines (around 3 a wk), acid reflux, chronic constipation, etc but mostly we have alot of qestions and no answers. She's tiny (around 50 lbs) and has a really hard time gaining weight, is constantly complaining of back/neck pain and body aches/joint pain, catches every bug around and holds on to it, has horrible doubled over, screaming stomach pains. W'eve been told these could be adominal migraines (all the pain of a migrain localized in her abdomen). We have spent tons of time in the ER and different Drs. offices and still no idea why she's so sick. She misses too much school to stay with the class so now she's homeschooled. I just don't know what to do. The Drs seem to blow this off as all in her head but I know theres something wrong and it is so horrible and frustrating to not know what it is or how to help. No amount of medication or diet changes have even made a dent in her discomfort. What do I do now? Also thoughts and payers would be welcome.

Is she on any medications for pain or any other reason?

 

[sweetmarieT]

For the past three years my DD12 has been dealing with multiple unexplained symptoms. We've gotten a few diagnosis': chronic migraines (around 3 a wk), acid reflux, chronic constipation, etc but mostly we have alot of qestions and no answers. She's tiny (around 50 lbs) and has a really hard time gaining weight, is constantly complaining of back/neck pain and body aches/joint pain, catches every bug around and holds on to it, has horrible doubled over, screaming stomach pains. W'eve been told these could be adominal migraines (all the pain of a migrain localized in her abdomen). We have spent tons of time in the ER and different Drs. offices and still no idea why she's so sick. She misses too much school to stay with the class so now she's homeschooled. I just don't know what to do. The Drs seem to blow this off as all in her head but I know theres something wrong and it is so horrible and frustrating to not know what it is or how to help. No amount of medication or diet changes have even made a dent in her discomfort. What do I do now? Also thoughts and payers would be welcome.

I feel your pain! We went to hell and back to have our 11yr old diagnosed. Our GP told us for over 4 years that Cassie was having growning pains and to take her home. I figured with constant growing pains for that long she should be over 7 and a half feet tall and she wasn't. To make a long story short....Cassie was finally diagnosed with Muscular Myotonic Dystrophy in May 2011, so it took about 8 years to get a "TRUE DIAGNOSIS"!

My oldest daughter had a hard medical battle for the last 8 years as well. Our GP said that she was having stomach migrains as well....Come to find out she has re-accuring accute pancreatitis. She has all the same symptoms as your daughter. It started after a car accident(they think that has no barring- but I think its coinsidental to say the least.) Anyway its a disease that usually affects older, over weight alcoholic men but somehow she has it. She still struggles with it to this day but has learned how to deal with the cronic pain for the most part.

Sorry my spelling is so bad....its almost 5am and I have yet to hit the bed. LOL My mind races so much that its hard for me to sleep. Good luck with your daughter and we will keep your family in our hearts and prayers.

 

[figmentswife]

Praying for you

 

[Chelley00]

Sounds a lot like classic Celiac to me too. Especially her low weight. I have multiple food allergies and have many of the same symptoms. Hope your new doctor figures out what's going but don't be afraid to push for me and a visit to a pediatric gastroenterologist might be in order.