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Ds's says...my arms and legs keep tingling.


qannie47
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This is freaking me out. When my ds's spinal revealed 2 O bands, I was reassured by my Ped's doc that it was not MS because he had no brain lesions on MRI and his protein levels were borderline low and not high...He also said that I can put this to rest about worrying about this in the future. Now I have delbt with doctors long enough to know that they will say things like that to alleviate worry when nothing can be forcasted about the future. However, I truly trust this doc and he has never let me down.

 

Then, about a week ago, with those concerns still lingering in my brain, I asked my ds a question when he was displaying those motoric movements that crop up when flaring and sometimes between flairs...I asked him, "Do you move around like that for a reason? Do your arms or legs feel funny that you do this?". He answered right away, "Yes, they feel all tingly". Being that he is only 8, it was hard to get him to quantify this as far al how long this has been going on, but from our conversation, it has been awhile. Then, 2 nights ago, he came up to me and asked, "Mom, do you ever lose control of your hand?". A chill up my spin, and did not answer his question directly, but instead I asked, "Why, do you?". He said yes and went on to explain that sometimes for a moment he feels like he cant move it and then it feels like somebody is squeezing his had real hard.

 

Really? I mean really??? I don't know how much more worry my shoulders can carry...

 

Have any of you heard of this? Growing pains? Side effects to abx? He is on Lipoic acid, biotin, vit c, mutltiple, fish oil. That's about it....

 

 

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My 8 yo also has this. She has moderate large muscle group tics (& tongue darting-I think that fits into SC criteria? ?)

She has described both the tingling and squeezing your son mentions.

She has no psychiatric symptoms at this time. She has in the past, also with tics.

Edited by powpow
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DD used to mention tingling as part of her premonitory sensations before a tic.

 

I think a good question for your son might be "does the movement you make with your arm or leg make the tingling/squeezing go away?" In that way you can start to differentiate the tingling due to a premonitory sensation from tingling caused by neuropathy.

 

http://www.mayoclinic.com/health/tourette-syndrome/DS00541/DSECTION=symptoms

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In 2001 I had constant numbness and tingling in my right hand and right foot, and when my husband found out he made me go to my primary care doc to get it checked out. He had me do a brain MRI with contrast dye, which showed no demylination (read: no definitive signs of MS). So, my doctor said I was fine and told me to stop drinking coffee.

 

Fast forward to 2009, when my son's pediatric specialist advised me to get tested for Lyme and co-infections, as she sees a lot of mothers of children with autism and Lyme also have Lyme (as their kids get it in utero). Turns out I was positive for Lyme and Ehrlichia. If only I'd known years before --- life would have been very different for me and my sons.

 

My advice:

- find and LLMD (the ILADS website is a good resource for getting you started for this)

- get your son tested for Lyme (borrelia) and co-infection panel through Igenex

- you may trust your doctor and he may be right, but then again, doctors are not perfect and medicine is full of unknowns.

 

Hang in there! You're not alone in this.

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rowingmom: I will ask him...except he does the movements over and over, there does not seem to be relief for him. However, it is the joint compression that seems to give him relief...does that make any sense to you?

 

Powow: in his first episode he looked very SC...big rhythmic movements..these new movements are more quick herky jerky...karate chops and leg kicks and throwing himself into walls, couches...

 

Vbakersmon: Thanks. Testing for lyme was next on my list when another blood draw was taken...

 

This was helpful, thanks guys....maybe I will sleep tonight.

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you may want to learn about migraine headaches with aura. if you have a neurologist - you can discuss with him/her. a google search will bring you lots of info -- it is very possible to have migraines without the headache, so don't focus on whether or not he has that -- the tingling is part of the aura -- it is a neurological event. may not be -- just a suggestion, to think about.

 

generally, it is considered idiopathic, although there are many theories about triggers. there are people who also believe it is triggered by infection and/or TBI.

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I'll toss out two other things to put on your list to investigate. For the past few months, DD (non-Pans, non-lyme) has been complaining of "feeling shaky" and dizzy. Her hands were trembling (as in tremors) and continued to tremble even when placed on a flat surface (so no muscle strain to keep them elevated). She drinks very little and the two symptoms (tremor, dizziness) seemed to resemble POTS a little. One treatment for POTS is hydration. So we started monitoring her fluid intake and really pushed fluids. The dizziness went away and she felt better. If she went a day or two of not drinking much, it would come back. So hydration, as simple as it sounds, is something to push in general.

 

But even after the hydration success, there have been a few times when the tremor appeared. Weeks go by without incident, and then it shows up for a day or two. I pulled out a Genova nutrient analysis we did over the summer and I saw that she was deficient in a few things - B12, manganese...which we addressed. But she was also deficient in choline, which I'd blown past and done nothing about. Choline is involved in nerve health (as is B6 - something else to consider). Began supplementing last week, so too soon to give any success story. But something to google.

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rowingmom: I will ask him...except he does the movements over and over, there does not seem to be relief for him. However, it is the joint compression that seems to give him relief...does that make any sense to you?

 

Vbakersmon: Thanks. Testing for lyme was next on my list when another blood draw was taken...

 

 

When DD had bad exacerbations, ticcing would be almost non-stop, but still driven by the premonitory sensations. She did not tic while sleeping.

 

I'm glad you have the joint compression manouvers to give your son some relief, although it must be exhausting for you to keep it up for days at a time. I will keep you both in my heart.

 

Please consider testing for all coinfections as well. It could be money well spent as lyme (blaringly present or only slightly so) doesn't seem to cause the problems that the coinfections do. Many physicians don't agree with or understand lyme diagnoses, but will understand the complications associated with bartonella, babesia, ehrlichia, RMSF, mycoplasma etc.

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Rowingmom: Interestingly enough, when contemplating lyme, my mind always goes back to about 4 years ago when I noticed a golf sized mosquito bite on my ds's back. He had a history of getting rather inflamed mosquito bites so I was not really concerned, but this one really stood out. It did go away pretty quickly, but what I realized when recently contemplating this was that around that time was when I started experiencing a rather debilitating fatigue. I mean bad. This came and went for about 2 years and I chalked it up to caring for two high energy boys and no help from hubby plus low on vit d. I experienced high joint pain ever since then and still do at times. That fatigue is non existant for the last 2 years....mysteriously went away as quickly as it started. Also, my ds's joint pain behind his knee started around the same time after that odd bite....I wonder more now then ever what his lyme tests will reveal when I have them done......

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rowingmom: I will ask him...except he does the movements over and over, there does not seem to be relief for him. However, it is the joint compression that seems to give him relief...does that make any sense to you?

 

Powow: in his first episode he looked very SC...big rhythmic movements..these new movements are more quick herky jerky...karate chops and leg kicks and throwing himself into walls, couches...

 

Vbakersmon: Thanks. Testing for lyme was next on my list when another blood draw was taken...

 

This was helpful, thanks guys....maybe I will sleep tonight.

You mention that joint compressions are what gives him relief. This is what I use with my sons to calm their sensory issues (they both need a lot of sensory regulation as sensory processing issues are a big part of their autism and it was much worse when the Lyme was not yet treated). I also put couch pillows over their legs and press down to point of comfort and this helps calm them. There's a great book called "The Out of Synch Child" that goes into great detail about Sensory Processing Disorder and gives lots of practical advice for sensory activities you can do at home to help.

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Testing for Lyme and co- infections would be a good idea.

When that very same thing was suggested to me here on this board,

I thought it sounded crazy-

My sheltered daughter having Lyme disease? What?

 

Dd had a sensory processing disorder dx at age 4 by an Occupational Therapist-

10 months of SPD therapy, which included me brushing her and joint compressions

every 2 hours! Listening therapy, etc.

Did not bring about recovery. Maybe it helped in some brain areas? I can not pinpoint, but there was no big victory flag.

Later, I realized some of what I thought were sensory issues were really OCD-

like the clothing issues, which I could write pages and pages about,

and which are now thankfully gone.

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I wonder if that tingling is how he articulates the feeling that a tic is coming on? My guess that you your son has true sensory integration issues as well. My kids were diagnosed with SPD when they had all the symptoms but none of the treatments help resolve anything. It sounds like treatment helps your so nretulated himself. We did the couch cushion compression also. Large bean bags work also, or making likes of studded animals and allowing his body to sink in as if it were a nest. Also bouncing on a therapy or excersice ball, all if these things were recommended by our OT. None of them resolved anything for us bc my kids SPD symptoms were brought on by pandas and resolve when they're not in a flare.

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Thanks everybody....this all puts my mind at ease a little bit. I am going to test for lyme with next blood draw, that should be interesting. ds was diagnosed at age 5 with hyp0-sensory, so maybe that is the way he articulates....I just don't like what he says about not being able to move his hands sometimes...I will keep an eye on that...I wonder if he is just sleeping on it and it is falling asleep. He gets his tonsils out dec 30th....wish us luck!

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