looking for medical opinions

[AngieW in Texas]

I am still trying to figure out what's going on with my 12.5yo. I want to get her a doctor's appointment, but all I got was voicemail when I called and they didn't call me back today. I will call tomorrow and keep calling until I get a person.

 

All of this started about one year ago.

 

Last February, my dd would periodically experience acute chest pain just below the right breast. This would happen at completely random times, maybe 2-3x/month. We went to the doctor and my dd got a chest xray. There wasn't anything abnormal in the xray, so the doctor said maybe it was just a random pain and to come back if things changed. She was also having trouble sleeping, but melatonin helped. She had trouble both with falling asleep initially and with staying asleep.

 

By July, the chest pain had stopped. Instead, she was experiencing panting episodes. These were completely random. They happened while watching tv, while swimming, while going for a walk, while reading a book, while anything. We went back to the doctor and she didn't know what it was. She recommended that we see a cardiologist since it all started with chest pain. She was still having sleep issues, but the melatonin wasn't helping anymore.

 

We saw the cardiologist and were happy that he said she had no problems that he could find. Unfortunately, he had no idea what the "breathing problem" was.

 

By August, the "breathing problem" was happening 5-10x/day, every day with absolutely no way of predicting when or where it would strike. She would suddenly start panting and not be able to stop for several minutes. Once she got her breath back, she was completely normal. The sleeping problems were still going on.

 

I posted about the problems she was having and got a recommendation to have her checked for vocal chord dysfunction by an otolaryngologist. He said her vocal chords were just fine, but he thought her tonsils were rather huge and could possibly be causing sleep issues. Her sleep problems were still going on at this point.

 

Her 1st period started in September or October.

 

In October, my dd had a horrible breathing episode where she was stuck panting over an hour. This was the first time I was able to get her to the doctor's office during an attack (all the others were short enough in duration that they finished before we could possibly have gotten there). The doctor didn't see her while it was going on, but a nurse did. The doctor sent us to a pulmonologist just to make sure that allergies weren't causing the problem, but she said that she though it was actually an anxiety attack. The sleep issues were still going on and nothing was helping with them.

 

The pulmonologist couldn't find anything wrong.

 

I didn't think anxiety attack sounded right because the only thing my dd was actually worrying about before or during the attacks was that they wouldn't stop. However, Jean in Newcastle posted in response that she had similar issues caused by a magnesium deficiency. This dd has a horrible diet and pretty much nothing that she eats is a good source of magnesium and her multivitamin didn't include it either, so I bought a magnesium supplement and started my dd on it. The breathing episodes stopped two days later. She went from 5-10x/day, every day to none at all for several months. The sleep issues continued though.

 

By this point, I was pretty sure that the breathing episodes were anxiety attacks. My dd was also having issues with depression, primarily at night.

 

In December we switched to a different doctor because our doctor was closing her practice and didn't seem to really have a clue anyway. My dd's sleep issues were getting pretty horrifically bad at this point. She does best on 9 hours of sleep/night and she was doing well to get 4-5 hours and wasn't getting that all in one chunk. She was horribly sleep-deprived.

 

I went to a new doctor to see if maybe she could refer my dd for a sleep study because I had a feeling that maybe the anxiety and depression my dd was experiencing were due to sleep deprivation. She had also started to become extremely jumpy. Just about anything could make her jump out of her skin. If I walked into the kitchen and then came back to the living room from the other side, my dd would be completely startled and would jump and even make a little scream. She thought that my dd might be ADD and that could be causing the issues. I will say that my dd was very jittery the whole appointment and was acting kind of ADDish. She is nothing at all like my very ADD oldest dd though. Since my dd starts getting a runny nose every evening, she recommended that we try Zyrtec at night. The Zyrtec did seem to help her get to sleep a little better, but it didn't stop her from waking up at 2am or 3am and laying there awake for several hours.

 

About mid-December, the breathing episodes came back. The magnesium didn't seem to have any effect on them any more, although my dd has continued to take it. Sleep was still a major issue. The quality of every day was predicated on how well my dd slept the night before.

 

I tried taking her to a counselor to see if maybe he could help with the anxiety and depression, which were starting to make her spiral down and the sleep issues weren't helping any either. Not only did he not help her, he actually made her worse. After the 2nd appointment, she was too afraid to see him again. I was sitting next to her the whole time, so I know what the issue was. He was talking with her about what things she got anxious about and he told her that he was surprised by her list because most girls her age were worried about this whole other list of things instead. This was a HUGE mistake on his part because then she also started worrying about all the things that he listed as well as worrying about worrying about the wrong things. She also got very depressed. The only thing he did that helped was tell her that vigorous exercise for 20-30 minutes at least 4x/week was reported to help as much as prescription medication. So she started going to the gym with me 4x/week.

 

Last night she had a really weird episode. I don't know what it was. She came over to me at the computer and sat down to work on her Habitarium (Neopets, if you're not familiar with it). The breathing thing started again, but it was much worse this time. She became so weak that she was afraid she would fall out of the chair. I got her down on the floor. She said several times that she couldn't feel her face or her right arm. It lasted maybe 5 minutes. Then she was okay, although it had scared her. I helped her downstairs because she was really weak afterward. Within 10 minutes, she seemed completely normal again. I don't know if she just had a really bad anxiety attack or if it was something else. When I googled, I got systemic lupus, transient ischemic attack, and underactive thyroid.

 

She has also been having episodes where she's suddenly freezing or boiling for no apparent reason.

 

Her sleeping has been better the past two months. I've started going into her room and staying there until she falls asleep. It helps her fall asleep faster and stay asleep longer. She still has nights where she gets just 4-5 hours of sleep, but she's getting at least 7 hours most nights and has had some nights where she's gotten 8 or 9 hours.

 

She is still extremely jumpy. She can be facing me and even talking to me, but suddenly jump and ask how I ended up so close to her. Could these be really short absence seizures? Or are they microsleeps? Or is it something else altogether?

 

I just want to find out what's wrong and fix it.

[katemary63]

:grouphug:

 

So sorry for your precious DD. I don't have a clue as to any advice except 2 things. 1. If her thyroid has not been checked, make sure it is. My DS has had panic attacks associated with low thyroid along with depression and all kinds of other weird symptoms. 2. Don't give up. Just keep seeking till you find a Dr. with a solution. God Bless you both. :grouphug:

[Sonshine]

This sounds so upsetting, to say the least

 

I don't have an answer. I do suggest taking her to a doctor or similar professional in your area that has a reputation for testing and treating hormones and other chemical insufficiencies. The difficulty regulating her body temp or perceived body temp made me think about that. Thyroid, adrenals, etc. could be off. You want someone people go to when their regular doc can't figure it out or has told them they are normal. You may want to google doctors who treat with Armour thyroid to get an idea of who to go to in your area.

[tntgoodwin]

I am actually experiencing very similar chest pain symptoms, as a 26 year old male. I am very curious to see the outcome of this.

[Kebo]

:grouphug: That sounds miserable.

 

Do the attacks occur or worsen around the time of her period? I have read of spikes of anxiety and feelings of weakness some women have around that time. It sounds like they started before her period, but the hormones could have been starting to fluctuate before the first period was evident.

 

The chest pain and tingling could also be from anxiety/panic attacks. You may find this link helpful

 

http://www.npadnews.com/anxiety-symptoms.asp#hormone

 

Best of luck to you finding someone very smart to put this all together and get you all some relief.

[Peela]

Sounds very strange but also sounds very much like something is really out of balance with her and a doctor needs to take it seriously and do a lot of tests to find it out. It could be a nutritional deficiency, a chemical imbalance, a glandular issue, or some rare condition that hardly anyone knows about- but I wouldn't stop until i found out what it is- or at least, what works to fix it.

If the doctors cant find it, at least go to an alternative practitioner- or several- until they come up with treatment plans that works. A diagnosis can help, but if you don't end up with one, you can still work on treatments.

The jumpiness sounds related though to sleep deprivation, insomnia etc rather than something separate. Her nervous system isn't getting the necessary regenerational rest which is going to upset her endocrine system, he adrenals etc. I imagine you have tried carious natural sleeping remedies- herbs, hot baths etc?

Good luck- I can imagine how anxious you must feel for her.

[JudoMom]

I don't know what it could be, but I do have a suggestion--write all of this in a bulleted format and attach any labs she's had done and any tests she's had run (when she has tests run, I would also suggest that you get copies of the results mailed directly to you), along with the names and numbers of any doctor's she's seen. I would also immediately start keeping a log of her symptoms and when they occur. Take copies of this packet to any doctor you see.

 

:grouphug:--not know is a miserable place to be. It took us from the time my middle son was 2 until he was 4 to get a dx for his arthritis. If it is an autoimmune disorder that doesn't present in a textbook manner, they can be very hard to dx (it just took 7 months for my dx of autoimmune hepatitis), and I've found that most doctors really appreciate the easily referenced facts and log.

[Halftime Hope]

Here's what I'd try next if she were mine; please forgive me for being an opinion-giver instead of a "coach":

 

Your description of the weakness and lack of feeling in the face and arm really concern me, as those sound like TIA symptoms. I would have her see a neurologist and push for an MRI or some kind of scan of the brain, just to make sure there isn't something "mechanical" (structural, as opposed to a chemical imbalance) going on there.

 

I would also ask the neurologist if there is some kind of transient event such as a spasm of some kind in the brain (don't even know if that's possible) or somewhere else in the neurological system that effects the brain, that would cause symptoms like hers.

 

The most basic question is what is at the root of this--something physical that is triggering a cascade of other things including, eventually, pyschological complications, or does it start with, for example, anxiety which then manifests in myriad physical symptoms. If she had an MRI, that would confirm or rule out (hopefully) one logical area in which there might be a physical basis for illness.

 

Angie, my heartfelt wishes go out to you for a diagnosis and fix for this! May God grant you and her docs wisdom!

[TravelingChris]

The hallmark of panic attacks is that first the person gets them and then they look around or start to think what may be making them panicky. It really is a physical issue first and then comes the psychological. It does sound like panic attacks to me.

[jplain]

Regarding the chest pain, look up precordial catch syndrome. Does that seem to fit? It is common in kids, benign, and not heart-related. Though it is typically felt on the left, my sister and I had it on both the left and right sides of our chests when we were kids.

 

I do agree that the rest sounds like anxiety attacks. I've had one anxiety attack, and I never was able to identify any trigger at all. Around the time it happened I was actually less stressed than usual. But even when it is "just" an anxiety attack, there still may be a physical cause.

 

As others have mentioned, it would be worthwhile to check your daughter's thyroid function. Ask for at least TSH, free T3, and free T4. In your shoes I might push for thyroid antibodies too. Many practitioners start with just TSH, but many people with thyroid dysfunction have normal TSH. They should also order a CBC and chem panel (basic metabolic panel). And if you're really concerned about the possibility of lupus, try to get ANA added in. A negative ANA more or less rules out lupus.

 

Given the loss of sensation on her right side, if the blood work comes back normal, I'd ask for a referral to a neurologist.

 

Has she been taught to meditate? I'd strongly recommend that she try mindfulness meditation, starting with 5 minutes a day and working up to (ideally) at least a half hour a day. I know some are wary of meditation because they worry that it is incompatible with their religious practice, but I promise that is not at all true for mindfulness meditation. Mindfulness meditation is a powerful tool for improving health, and it is being used with great success in many well-respected medical clinics. Simple instructions can be found here. First thing in the morning or last thing before bed are good times to pick, as she's likely to be able to have quiet, uninterrupted time then.

 

(As an aside: it won't work to try meditating while in the throes of an attack. In fact, trying to deepen or control breathing during an anxiety attack may actually prolong it. However, a regular practice of meditation and/or deep breathing at other times may help decrease the incidence of anxiety attacks.)

 

If meditation doesn't appeal to her, a meditative physical activity like Hatha yoga or Tai Chi might be a good fit. Though there are good yoga videos, as a beginner yoga is best done in a class. She's old enough that most yoga instructors would probably be okay with her taking a regular (adult) beginner's class at a yoga studio, but do call ahead and check.

 

:grouphug: to both of you!

Edited March 9, 2011 by jplain

[Giraffe]

PM'd you.

[Catherine]

Since TIAs are vanishingly rare in 12 yo girls, and panic attacks are pretty common, I'd not assume the worst, yet.

 

You mentioned her diet, and response to magnesium, and that immediately made me wonder about vitamin deficiencies, particular iron deficiency. My friend's daughter had a long struggle with panic, anxiety and depression that was 95% better after her borderline iron deficiency was corrected. Iron deficiency can cause strange behaviors and psychiatric symptoms of many kinds so I'd try working on her dietary iron, and give supplements too if she's too picky to truly increase her iron. In order to truly rule out subtle iron deficiency, the doctor needs to test for not just iron levels, they need to check ferritin as well, and it should be in the normal range. If it's low normal, it can't hurt to increase her iron. Well, iron *can* be toxic if oversupplemented over long periods of time, but if her ferritin is low normal, there is no risk of this.

[ktgrok]

It does sound like panic attacks, with hyperventilating (which could cause the numbness). I've had two in my life, and they are scary. The weird thing is I wasn't worried about anything when they happened. One happened at a football game, and my only thought was the noise combined with being a bit overheated, but the other one happened indoors while working at a quiet office. Very scary, but just panic attacks. The lack of sleep could certainly cause all the other symptoms and make the panic attacks worse, which would make the sleep worse, and the cycle continues. She needs to get some sleep!!! A sleep study may be your only answer, although some over the counter sleep aids might help in the meantime.

[datgh]

I've experienced a lot of your daughters symptoms and mine started at around the same age as your daughters. For me it was anxiety and depression. I have had major sleep problems similar to your daughters. I would wake up with my mind just spinning and wishing I could shut it off. It is a major symptom of depression and anxiety.

 

The physical feelings she is experiencing cause her anxiety because she is afraid they will happen again and is scared to death of them. I would try to find a counselor who is a better fit for her. Someone who specializes in Cognitive Behavior Feedback. The counselor I had taught me how to diffuse the physical feelings basically teaching me that they couldn't hurt me. Once I lost the fear of them they had no power over me and that was the end of them. Of course my body would then decide to express my anxiety in a new way but with practice it has become easier to sort symptoms out and hasn't been much of a problem anymore. The councilors also taught me different coping strategies and relaxation techniques. My muscles would be so tense when the anxiety was at it's peak. They had me train my muscles daily to the point if I felt tense I actually can relax them on command. I am then in control and symptoms have no power because I can control them. It takes practice to get to this point but once you do the change is amazing

 

Thought patterns also play a big part in it all. Thanks to counseling I recognize mine. When I find myself starting to feel really depressed and anxious, I sit back and analyze my thoughts and low and behold I see the old patterns sneaking in again. Once I see what is happening I work at changing my thought patterns. It is amazing how you think can affect how you feel.

 

One last thought, if after a month or two of counseling your daughter doesn't feel it is helping switch counselors. I wasted a year with one and wasn't getting anywhere. Luckily she moved. The next counselor had me feeling so much better in a month! Also, if medication comes up don't immediately dismiss it. Sometimes it is needed to get things calmed down a bit so the counseling can really be effective. Make sure you go to a psychiatrist or nurse practioner who specializes in this kind of medication. I have found that general practioners aren't as knowledgeable as to how the medication affects different individuals. I wouldn't do the medication without the counseling. Medication is the short term fix learning how to deal with your mind is the lifetime fix.

 

Sorry this is so long but I have been where your daughter is and it really touched my heart for her and for you.

[katemary63]

I wouldn't dismiss anxiety attack. My sister has them and they aren't necessarily triggered by what you or I would consider an anxiety producing event.

:iagree:

[AngieW in Texas]

We do have an appointment set up with a psychiatrist who specializes in adolescents, but we have to wait two more weeks for that. I only found one within an hour of my house who took new patients with Cigna and it took a lot of calling to find him. While Cigna has a nice long list of psychiatrists on the plan, finding one who is taking new patients is exceedingly difficult. He also had a LONG lead time. She has also had an appointment on the books for April with a pediatric neurologist. He also had a LONG lead time. So we are trying to go that route, but these doctors are apparently in very high demand.

 

Another weird symptom that I forgot to mention above are that last week, she got brown spots on her neck. It actually looks like dirt, but it won't wash off. It appeared on the right side of her throat first and a few days later it appeared on the left side as well. She is very athletic in appearance (because she does enjoy working out with weights at the gym) and is only about 95 pounds at 5'1.5".

 

And yet another weird symptom that she gets intermittently is joint pain. This is usually her knee or her ankle and can be on either leg. She is often lying down when this occurs and it hurts for several minutes. She says it feels like somebody is driving a spike into her joint, but she has felt like it was a hammer blow before.

 

We have an appointment with the regular doctor in an hour.

 

eta:

I didn't follow up on the tonsils because the original doctor, the new doctor, and the pulmonologist all said that her tonsils were fine. We had three appointments with pulmonologist (several bouts of testing) and he couldn't find anything wrong. Her CBC was normal, her iron count was normal, and the only thing she reacted to during the allergy testing was the control (which was shocking considering all the allergies that we have in the family).

Edited March 9, 2011 by AngieW in Texas

[Jean in Newcastle]

Angie - has she ever been tested for diabetes? Diabetes can cause a discoloration around the neck. It can also (when untreated) cause hyperventilation. It can also cause sleep problems and panic attacks.

[AngieW in Texas]

Just got back from the doctor. The doctor is pretty sure that just about everything is due to the anxiety. She wanted to do bloodwork, but my dd went into a full anxiety attack about that, so we are waiting until after she has the appointment with the psychiatrist in two weeks.

 

She said that if the discoloration doesn't completely fade in the next 2-3 weeks, we should come back for testing.

 

She made a note in my dd's chart about doing some bloodwork if we can get dd calmed down about it. There were no symptoms that made doing bloodwork an urgent thing to do immediately. She is hopeful that the psychiatrist will be able to help with the anxiety and depression and that taking care of them will also fix her sleep issues.

 

We are keeping the appointment with the neurologist that we have for mid-April. It takes such a long time to actually get an appoinment there that we are going to do it just to make sure that we don't miss anything.

[EKS]

ETA: I just looked this up and it has all of the symptoms you described--chest pain, breathing problems, coldness, intolerance to heat, sleeping difficulties. Here's a link: http://www.dinet.org/symptoms.htm

 

Autonomic nervous system dysfunction? Keep in mind that I know nothing, but it sort of sounds like the part of her brain regulating her breathing is acting weird. The hot and cold thing sounds like that too. Have you seen a neurologist?

Edited March 9, 2011 by EKS

[Tap]

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002436/

 

I would guess the brown spots are this.

 

The best treatment I know of, is to use Selsum Blue shampoo. (You can get it at the grocery store or general merchandise store. It will be with the dandruff shampoos). Apply the shampoo to the skin, leave it on for about 20minutes (in the bath is easiest-it is Very blue) and wash off. IF it is going to work you will likely notice a difference in the first treatment, but depending on how bad it is, you may need to treat a couple of times.

 

The ironic think is that the article mentions boys are more likely to get it, but Every case I know of, has been on a girl. Each girl had long hair, and let it air dry. The prolonged dampness of the wet hair is a common culprit in the formation of it.

 

You can also try a typical anti-fungal, but for some reason the shampoo seems to work the best. I am guessing because it is designed for dandruff/fungal infections of the scalp, it has an ingredient designed to loosen the sloughed off skin.

[kalanamak]

It does sound like panic attacks, with hyperventilating (which could cause the numbness).

 

:iagree: Has she tried the paper bag breathing?

[jplain]

Now that you've mentioned joint pain, I'd add a few more things to consider and rule out:

 

Vitamin D deficiency

Vitamin B12 deficiency

thryoid issues (again)

Lyme disease (Where do you live? You can have Lyme with no history of tick bite or bullseye rash.)

 

The discoloration on her neck sounds like melasma, which is both common and benign. It can be triggered hormonally (as in pregnancy), by various drugs, and by sun exposure. It affects females 10x more often that males, leading weight to the theory that it is influenced by hormones.

 

If the patches on her neck bother her, I'd instruct her to use sunscreen on her neck at all times. Hopefully it'll just fade on its own.

[KidsHappen]

I am going to come at this from a different direction that everyone else and say that I think the sleep issues may be at the heart of the problem. Long term lack of sleep can throw your body off kilter and effect all body systems and your body can not mend itself until it gets enough sleep. I honestly would work on solving that problem first and see what effect it might have on everything else.

[cjzimmer1]

I really can't comment on the breathing issues or anxiety since I've never dealt with that but I have found that my sleeping is very much affected by my Vitamin D level. And of course if I haven't had proper sleep a whole bunch of other things materialize. My doctor hadn't heard of it but I told her I had problems falling asleep and then I would wake up multiple times a night for an hour or more and not be able to sleep even though I was tired. I read something about D and sleep being related and so I doubled my Vitamin D. Within 2 days I was sleeping soundly through the night. When winter came and I found I wasn't sleeping so well anymore (we are in the North so lots of gray cold days and not much sunshine), I increased my D again and everything was better.

 

It's a simply blood test and it might help. You want it to be over 50 even the the supposed normal range is 20-100. Most everything I've read says over 50 is best but the people who set the "normal" ranges haven't updated anything.

 

If you do end up supplimenting make sure she is take D3. D2 is not very usable by the body.

[HollyDay]

You know, some of this sounds like perimenopause. You mentioned sleep trouble, panic/anxiety attacks, hot/cold, skin issues. If she were 45, I'd bet they would blame it on "just hormones". Can you get her hormone levels checked? Would she mind a saliva test rather than a blood test? Keep pressing on until you get an answer........

[AngieW in Texas]

The paper bag made things worse when she tried it.

[TXMomof4]

I am going to come at this from a different direction that everyone else and say that I think the sleep issues may be at the heart of the problem. Long term lack of sleep can throw your body off kilter and effect all body systems and your body can not mend itself until it gets enough sleep. I honestly would work on solving that problem first and see what effect it might have on everything else.

 

:iagree: I vividly remember not being able to get to sleep, worrying about how I was going to function the next day if I didn't get to sleep, which made it harder to get to sleep and eventually I was miserable. That was right around 11/12 yo. I still struggle with insomnia, which leads to panic attacks for me. The panic attacks have no obvious trigger - my heart will feel like it's about to beat out of my chest and I can't catch a deep breath. Now I *know* what it is, but it was terrifying at first.

[Cindy in FL.]

Is it possible that the chest pain and the breathing issues are separate? My 11 yo ds has sharp chest pains sometimes which we believe are related to acid reflux. Could that be the source of chest pain for your dd?

 

Was she worried about the chest pains and that caused her to start having anxiety episodes? I have anxiety/panic and I get short of breath out of the blue. I believe that my body is so sensitized by my anxiety that it just subconsciously takes over. I have a myriad of issues related to the anxiety that wax and wane depending on how things are going: jumpy, brisk reflexes, skin issues, chest pain, shortness of breath, lightheadedness, etc.

 

I hope that you are able to get to the bottom of this!

[kalanamak]

The paper bag made things worse when she tried it.

 

I use pursed lip breathing or I hyperventilate when rushing. I've seen a seasoned nurse get a panicking person to time her breaths with the nurses, with close eye contact. Important to stay absolutely calm yourself.

[blondeviolin]

I'd say it also sounds like anxiety, but I'm not a doctor.

 

I will tell you, though, that I would not rule out VCD. An ENT CAN diagnose VCD but only via a laryngoscope DURING an attack. If there is no breathing issue while it's happening then it is a moot point. So, unless your ENT triggered the breathing issue, it still could be partly VCD. (Which can be exacerbated by anxiety, so could be two-fold).

 

Hugs to you all!

[chickenpatty]

:grouphug:I'm so sorry for your dd. A friend of mine suffered from anxiety attacks for years that sounded like your dd's. They finally discovered that it was from her thyroid. The normal thyroid bloodwork for her looked fairly normal. I think they found it out by the radioactive testing- I'm sorry I can't remember terms or details - of her thyroid. She has since had her thyroid "killed" instead of removed surgically, and is on synthroid and doing much better. She had many emergency room visits & ambulance visits while going through the anxiety/panic attacks. It was debilitating & prevented her from leading a normal life.

 

:grouphug: