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Tell me I'm being paranoid. Second kid -- bart?

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Posted 11/1/2018 9:57 AM (GMT 0)
Starting to have a few alarm bells go off re: my 15-year-old. His issues:

- He has always hated having anything touch his chest at a certain spot on the sternum. Lots of nerve endings there, probably just a quirk.
- Random pains in chest and elsewhere that go away quickly. Doctor pointed out that he has grown 10 (!!) inches in two years and it could be growing-type pains.
- Last week he had a severe episode of chest pain while sitting in class and almost passed out. School called an ambulance. ER attributed it to dehydration. It was noon and he had not had more than a few sips to drink all day.
- Limbs fall asleep quickly with pressure or lack of motion.
- He has complained that he can feel his heart beat. He doesn't like to lay on his left side because of that. (This is where the alarm bells started going off. This is a symptom for me. Several nerve-related things on this list now ...)
- Foot pain. He has flat feet. Seems to be worse with walking -- haven't heard him complain about it in the morning. Supportive insoles help.
- Occasional headaches.
- Lingering cough.

He told me yesterday "I feel like something has changed. My headaches are different."

Pretty much all of these things can have other explanations, but I'm starting to wonder if maybe he has bart too. sad Please tell me I sound crazy and paranoid. (That is for sure how I would sound to their father and doctors.)
Posted 11/1/2018 2:02 PM (GMT 0)
Dahlias,

I'm sorry but I definitely don't think you're being paranoid or delusional.

I personally would not assume just bartonella. Can you get him evaluated by an LLMD?

Has he had tick bites, or do you think you may have passed it to him?
Posted 11/1/2018 2:22 PM (GMT 0)
"He told me yesterday 'I feel like something has changed. My headaches are different'."

- This happened to me, too, a few years back. I'd had headaches since childhood. In my teens, they started to feel like sinus headaches, as they were accompanied by sinus pressure, eye pain, and congestion.

A few years ago, they changed to a more pressure type pain across the forehead, sometimes stiff neck, and a different type of eye pain where I was more sensitive to light and found myself frequently rubbing and massaging my eyes.

Before, I had more one-sided pain and more stabbing eye pain that would switch sides at night depending on which side I was sleeping on. I dreaded going to bed with a headache back then because it always got worse when laying down and would last for days.

I mentioned to my doctor that my headaches had changed and my go-to OTC regimen wasn't working anymore. He thought my new headaches might be migraines and Rx Imitrex. It works for me. Thankfully, I only have them a few times a month, and I feel they are hormone related.

I have erhlichia, too. Everything I've seen on that mentions headaches, but the other infections all involve headaches of various kinds, too. No one seems to know how to differentiate ehrlichia symptoms from the others. I suspect each of the infections cause their own unique presentation of headaches and other overlapping symptoms.

Anyway, I totally relate to him saying he felt like sonething had changed - not just with headaches, but overall.

Was he able to identify WHEN he felt this change? What happened just prior - acute sickness, vaccine, camping or other trip, extreme stress, etc? You did mention he grew 10 inches in 2 years. A fast growth spurt could be considered stress on the body, IMO.

Puberty definitely does a number on girls. I assume boys, too.

Post Edited (WalkingbyFaith) : 11/1/2018 8:32:10 AM (GMT-6)

Posted 11/1/2018 3:47 PM (GMT 0)
Dahlias - I think there’s enough going on to have him checked by your LLMD.
Do they still have a paediatric practitioner or MD at the clinic?

Sorry you have this to worry about !
Posted 11/1/2018 4:00 PM (GMT 0)
Not what I want to hear, ugh.

Yes, he has had tick bites. We've all had many.

He said his headaches are now all around his head instead of just in the back. My LLMD's PA has said that a band around the head = tension headache. I don't think it was connected to anything new but I forgot to ask. But he did just get his flu and meningitis shots a couple days ago, so we'll see what happens. sad I was uneasy about it but couldn't think of any reason not to at the time. Plus he still doesn't have good health hygiene despite all of my nagging, so he tends to get a lot of germs (and then share with everyone too).

Girlie, I think they still take peds there, but I would more likely take him to the LLMD I take my daughter to. Gentler herbal approach there, which I prefer for kids who are not acutely sick. But there is no way in hell that his father will hear that right now, so I will be watching and having him keep a journal for awhile. He goes to the cardiologist next week and hopefully they'll test his nerves, so that should be informative. It is a very LL cardiologist that specializes in POTS.

Post Edited (Dahlias) : 11/1/2018 10:48:30 AM (GMT-6)

Posted 11/5/2018 7:53 PM (GMT 0)
His cardiologist appointment is tomorrow. I'll update afterward.

I really like functional/integrative doctors too. His sister goes to one for Lyme and co.
Posted 11/6/2018 9:32 PM (GMT 0)
The cardiologist said he has blood pooling and may have POTS. She ordered tests including Lyme and bartonella (I asked for babesia too). Here we go.
Posted 11/6/2018 9:36 PM (GMT 0)

Dahlias said...
The cardiologist said he has blood pooling and may have POTS. She ordered tests including Lyme and bartonella (I asked for babesia too). Here we go.

Darn!

I have blood pooling because of POTS. Does his pulse increase when he stands up from sitting?
It's supposed to affect BP too, but mine is fine. (ie BP should go up when you stand up...but with POTS it can drop - I think I have that right...lol)

I would also feel a pulse in my head when I stood up (different than my pulsatile tinnitus) ...rarely happens now...I think that was part of the POTS, too.
Posted 11/7/2018 12:18 AM (GMT 0)
His pulse increased and his BP dropped in the initial test (just lying down and standing). The tilt table test will be the last in a series of tests. I don't think he will qualify as having POTS because I was just short of the criteria and I was much more symptomatic than he is (thankfully). But it points to something going on.

The doctor had an explanation for the sensitive spot on his sternum -- first time a doctor has ever done anything other than shrug that off. He is moderately hyperflexible (if I'm recalling the term right). She said the ribs meet at that spot and since his connective tissue is weak, the ribs may press on the nerves beneath them. (Again, if I am remembering all the details right.) It makes sense to me. He had an awful time with the ultrasound of the heart because of that.
Posted 11/7/2018 12:49 AM (GMT 0)
Dahlias,

Hypermobility can be seen in certain people with CIRS genetic susceptibility.

"Hypermobility is seen in 11-3-52B HLA types along with TGFb1 and autoimmunity."

Copied from CIRS conference notes.
https://www.betterhealthguy.com/cirs2016.

Has he had the HLA-DR/DQ genetic test for CIRS? If not, I recommend it.
Posted 11/7/2018 1:12 AM (GMT 0)
Hypermobility, that's it.

I don't know -- they did a bunch of new blood tests today at the office, including for autoimmune indicators. I'll look to see if this is one of them when I get the results.
Posted 11/7/2018 1:30 AM (GMT 0)

Dahlias said...
His pulse increased and his BP dropped in the initial test (just lying down and standing). The tilt table test will be the last in a series of tests. I don't think he will qualify as having POTS because I was just short of the criteria and I was much more symptomatic than he is (thankfully). But it points to something going on.

The doctor had an explanation for the sensitive spot on his sternum -- first time a doctor has ever done anything other than shrug that off. He is moderately hyperflexible (if I'm recalling the term right). She said the ribs meet at that spot and since his connective tissue is weak, the ribs may press on the nerves beneath them. (Again, if I am remembering all the details right.) It makes sense to me. He had an awful time with the ultrasound of the heart because of that.

Yes that’s POTS with tha BP and pulse change.
Too bad drs don’t see that it’s a continuum.

My son had hypermobility in his joints wen he was younger.
I read all about ehlers dahnlos but it was shrugged off.

When he was finally diagnosed with celiac disease at 14 years old he went on a strict gluten free diet.

several years later the hypermobilty resolved.

I’m not saying your son has celiac - just pointing out that the hyper mobility could resolve once he treats the cause.
Posted 11/7/2018 1:36 AM (GMT 0)
Have you seen any other areas of hypermobility?

Elbows ... knees are easy ones to see.
Posted 11/7/2018 11:28 AM (GMT 0)
Glad you found a doctor willing to figure it out! DS had POTs like symptoms pre-diagnosis and during the early stages of treatment. I think many do because his LLMD practice always measure BP at each appt with them laying down, sitting and then standing. We've seen the improvements over time aside from the dwindling symptoms. It did go away after being in treatment for awhile. Keep us posted as you unravel it.
Posted 11/9/2018 6:59 PM (GMT 0)
Interesting that hypermobility can resolve, Girlie. The doctor noted hypermobility at 6 of 9 points including elbows and knees. None of them looked severe at all to me. My dad was much more hypermobile in his hands/fingers.

Daisies, thank you! Yes, very good doctor. I went to them myself originally after researching cardiologists with a reputation for knowing about POTS.

Yancync, I'm glad your DS has improved. My POTS symptoms have too, with treatment. His are just becoming obvious. I really hope we can stop it here. It would help if I could get him to go to bed at a reasonable hour.

I'm starting to think maybe I gave this to all of my children in utero. (That would mean I was infected long before I ever had symptoms.) I know that it is nothing to blame myself for, but I feel horrible at the thought that I may have given them something that could shadow them for their entire lives. It's also possible that we all just got it from bites from the same infected pool of ticks.
Posted 11/9/2018 7:41 PM (GMT 0)

Dahlias said...
Interesting that hypermobility can resolve, Girlie. The doctor noted hypermobility at 6 of 9 points including elbows and knees. None of them looked severe at all to me. My dad was much more hypermobile in his hands/fingers.

Daisies, thank you! Yes, very good doctor. I went to them myself originally after researching cardiologists with a reputation for knowing about POTS.

Yancync, I'm glad your DS has improved. My POTS symptoms have too, with treatment. His are just becoming obvious. I really hope we can stop it here. It would help if I could get him to go to bed at a reasonable hour.

I'm starting to think maybe I gave this to all of my children in utero. (That would mean I was infected long before I ever had symptoms.) I know that it is nothing to blame myself for, but I feel horrible at the thought that I may have given them something that could shadow them for their entire lives. It's also possible that we all just got it from bites from the same infected pool of ticks.

I don't think it usually resolves. With our son the hyper mobility was most likely because he was poisoning himself for many years with gluten...

If your Dad has it...it might be a hereditary 'thing' with your son...and not even related to lyme?

I wonder about our son...re; lyme.....
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