Update on Jessie's medical problem

[susiestar]

I took Jessie with me to the city today. I had an appointment with my rheumy and her pediatrician neuro is across the street. I was very persistent with them as we need ANSWERS NOW!

I had to return something at the mall and Jessie wanted to walk around. I stopped in Dillard's to visit a college friend who works there, and as we were leaving Jessie started shaking so bad she had to SIT DOWN on the floor.

I had pretty much HAD IT. I didn't want to leave the city because if we could get in it would be on short notice. Also, if they wanted us to go to the hospital the city has a pediatric emergency room and a full Children's hospital (this is very new - just 2 years ago it was about 8 docs, now it is a full hospital, though it shares things with the reg hospital!).

We went to the used bookstore we love. She got a cart and walked around. I got her an algebra book (NOT her fave!) and a couple of novels.

The neuro's nurse FINALLY called me at 1:30. She said that we should go to the primary care doctor. Primary care doctor had already said go see Neuro, we don't want to deal with this! I asked the nurse how I was supposed to go to the primary care when they have already said they don't want to deal with it.

I asked the nurse where the Children's hospital was (I wasn't sure which of the large hospitals it was in) and if maybe going there for tests and to start figuring this out would be a good idea??

She thought it was an excellent idea. Esp as our hospital in XXXX actually gave a child I know from thank you's school benadryl for a BROKEN ARM! That is nuts. It is all they want to do for any kid. Allergies play a big role, but come on, it is NOT a cure all!

We went to the hospital. Service was actually quite fast. 2 people in line ahead to check in, then we went to wait to be called. Less than a 30 min wait and we were in a room. The nurse talked to us, the doctor did a FULL neuro exam, then ordered blood work for electrolyts, basic blood panel and thyroid panel (FULL thyroid panel, not just basic level - doctor mentioned checking the parathyroid as well as thyroid), urinalysis and a CT scan of her head.

ALL of it came back "normal". They did NOT let me see the chart as I requested, says there is some policy and we can order a copy but the doctor gets in trouble if we look at the charts. It is a bunch of BS, but we were exhausted, I was in a lot of pain as was Jessie, and it wasn't worth the fuss. I will order a copy in the am.

They spoke with the neuro, and with the pediatrician. Told them both EXACTLY what tests were run and what the results were.

We are to make an appointment to see pediatrician on Wed. Must call at 8:00 am tomorrow to get an appointment (ER can't actually make appts for some reason).

So we are home. We know that none of the major stuff is wrong, including the muscle enzymes that would show if the spasms were destroying the muscles.

The docs DID she her shaking and in pain. Said it was clearly a problem but they had no idea how to help. Said we can keep trying the medications we have, and ask the pediatrician how to proceed. The doctor said that it was more a tremor than a seizure or spasm, though of course the muscles spasm when she is trembling. I am going to do research on tremors.

I am frustrated. I am somewhat relieved that it is not any of the really major stuff that would indicate an Emergency.

JEss slept on the way home. She was still sore, but when she woke up she didn't shake for about 30 mins. She was starting to think it was gone, and then it started again. REally hard.

I appreciate ALL your suggestions. I am not going to add supplements of any kind until we see the doctor. It is just not something I am comfortable with. We will meditate tomorrow and I will give her a massage to help with this.

Thanks for the prayers, sorry this is so long, and you are all great. Please keep praying that we can figure this out, and SOON - I don't like it when my baby hurts.

 

[Jena]

hey,

I'm glad you were incredibly persistent and stayed in the city and pushed and got those tests run. It is unfortunately a puzzle with Jess, and that stinks. Yet I am somewhat releived to hear that the major stuff is now "ruled" out. I can't imagine how frustrated you must be, yet take solace in knowing that as you said the "major" issues are ruled out.

I'm giong to go look around on web and see if i can come up with something for tremors. How are you feeling with all of this and holiday up and coming?? I hope she has a restlfull night and i'm sending you alot of (((hugs)))

 

[Jena]

Apparently tremors aren't as uncommon as we thought.

I hope this gives you some insight. I gotta go difficult child has had a horrible day, she's melting down again.

 

[smallworld]

What medication is she on for seizures? Could that be causing tremors?

 

[susiestar]

She is on Keppra. None of the docs think it is the problem. She has been on it for close to 3 years now, though we just increaed the dose. But she is not at the max dose, and the increase has been in very tiny increments. But I am sure it is possible, so we will have to ask about that.

Thanks for hte links. I am going to be researching a lot tonight and tomorrow.

And it really IS a relief.

Now her brothers can't say there is nothing between her ears - She has PROOF!

She was joking about that with one nurse. They all admired her spirit, esp as during the balance tests she kept falling over, but kept on trying.

That's my girl!!

Thankfully the registration person didn't demand the co-pay. I usually pay them right away, but I just can't right now. I brought it up and she said she quit asking people about it this week. Too close to the holidays. She is a single mom with FOUR kids, so she knows good and well. I pointed her to a couple of sites with good deals and Black Friday info. She really appreciated it - I thought she was going to hug me!

 

[mrscatinthehat]

Glad you stuck it out. I know how frustrating things can be when you don't get answers.

hugs
beth

 

[Hound dog]

Susie I'm feeling huge relief those tests came back normal. And you're wise not to give her over the counter supplements without doctor approval, anyway as they aren't "water soluable" and can also reach toxic levels in the body if you get too much.

I have faith you'll find the answer. You're one hellova warrier Mom. Give Jess a hug from me. Poor kid. She really is being a trooper.

Keep us updated. I dropped in tonight just to see how she's doing.

Hugs

 

[everywoman]

Susie, I'm glad you got some answers even though they really didn't give you the answer you need. I understand how difficult it is to watch a child in pain. Poor little Jana is much like your Jess. Jess's stuggles remind me so much of what Jana has dealt with.

Jana is such a trooper. Tomorrow she has her 2nd surgery in less than a month (well 3 if you count the one that didn't happen because of bloodwork). She has spent much of her 6 weeks since basic either sick or reucperating from surgery. They can't figure out her blood clotting issue or why she has white blood cells in her urine but does not show any symptoms of of a Urinary Tract Infection (UTI). It is baffling, but something we have been dealing with for years now.

She has learned to deal with many of her issues as she's gotten older. If a migraine hits, she recognzies the signs and takes her medications and hits the bed. If she feels any Urinary Tract Infection (UTI) symptoms she doses with peridian and cranberry juice.

She is now 19 and since she was 15 she has had her appendix removes, 2 knee surgeries (another tomorrow), her bladder stem stretched for frequent, untreatable white cells in urine, 3 hospital stays for untreatable migraines. I told someone the other day if she was younger they would probably lock me up for munchiousan by proxy (sp).

And yet she soldiers on (both literally and figuratively). Heck this girl went through 6 weeks of basic on a torn ACL!!! So, I know Jess, inspite of it all will continue to thrive and grow.

 

[susiestar]

Thank you all! It is very reassuring for me to be able to come here to all of you. It lets me get the worries out so I can be calm and strong when I am with Jessie. At one point today I just really wanted to cry. I was sitting there holding her while she shook uncontrollably and was trying to read to get her mind off the pain. She was trying to breathe slowly and deeply to keep calm, and it was very difficult.

She couldn't see my face, thank Heavens. She was leaning on me with her head on my chest (we were on a gurney).

Everywoman, WOW! JAna has been through so very much. It just amazes me the strength our young women possess. All they go through and still they have it in them to care about others and want to help others. Just amazing!

TEll Jana I am praying for her that this operation does what she needs and goes smoothly all the way through total recuperation. She is incredible.

 

[Hound dog]

Susie

Ok. We've been studying heavy metal toxicity in chemistry the past couple of weeks. And Jesse has been naggling at my brain..........

Has she ever been tested for heavy metals? Cuz I went looking and found this tidbit.

Lead
Acute exposure to lead is also more likely to occur in the workplace, particularly in manufacturing processes that include the use of lead (e.g., where batteries are manufactured or lead is recycled). Even printing ink, gasoline, and fertilizer contain lead. Symptoms include abdominal pain, convulsions, hypertension, renal dysfunction, loss of appetite, fatigue, and sleeplessness. Other symptoms are hallucinations, headache, numbness, arthritis, and vertigo.
Chronic exposure to lead may result in birth defects, mental retardation, autism, psychosis, allergies, dyslexia, hyperactivity, weight loss, shaky hands, muscular weakness, and paralysis (beginning in the forearms). Children are particularly sensitive to lead (absorbing as much as 50% of the ingested dose) and are prone to ingesting lead because they chew on painted surfaces and eat products not intended for human consumption (e.g., hobby paints, cosmetics, hair colorings with lead-based pigments, and even playground dirt). In addition to the symptoms found in acute lead exposure, symptoms of chronic lead exposure could be allergies, arthritis, autism, colic, hyperactivity, mood swings, nausea, numbness, lack of concentration, seizures, and weight loss.

Not saying it's the problem......just wanting to toss out the idea just in case you'd want to look into it further to see if it might be relevant.

Hugs

 

[Hound dog]

Ha! Having computer issues tonight so tossed out that post to make sure it got thru without finishing.

Lead can be in the soil in your yard (as well as other heavy metals) without you ever having a clue. In the paint in the house, or old water pipes....lots of ways you just don't really think about. Same with other heavy metals. You can do a google search on heavy metal poisoning and it'll show you most of the common ones.

Also......you're in the country right? How about pesticides? They can also cause neuro damage and symptoms.

Hugs

 

[smallworld]

I don't know why everyone's dismissing the Keppra, especially when Jessie just had a dose increase. That's frequently when side effects occur. Here's a list of adverse reactions for Keppra:

Adverse Reactions

>10%:
Central nervous system: Somnolence (15%), headache (14%)
Neuromuscular & skeletal: Weakness (15%)
Miscellaneous: Infection (13%)
<10%:
Cardiovascular: Chest pain
Central nervous system: Pain (7%), psychotic symptoms (1%), amnesia (2%), ataxia (3%), depression (4%), dizziness (9%), emotional lability (2%), nervousness (4%), vertigo (3%), agitation, anger, aggression, irritability, hostility (2%), anxiety (2%), apathy, depersonalization, confusion, convulsion, fever, insomnia, thinking abnormal
Dermatologic: Bruising, rash
Gastrointestinal: Anorexia (3%), abdominal pain, constipation, diarrhea, dyspepsia, gastroenteritis, gingivitis, nausea, vomiting, weight gain
Hematologic: Decreased erythrocyte counts (3%), decreased leukocytes (2% to 3%)
Neuromuscular & skeletal: Ataxia and other coordination difficulties (3%), paresthesia (2%), arthralgia, back pain, tremor
Ocular: Diplopia (2%), amblyopia, otitis media
Respiratory: Pharyngitis (6%), rhinitis (4%), cough (2%), sinusitis (2%), bronchitis
Miscellaneous: Flu-like symptoms


All of Jessie's sx are on the list.

 

[gcvmom]

I'm so sorry she is having so much trouble! It would freak me out too!

 

[KTMom91]

Glad you were able to get in, but sorry there were no definite answers. Sending hugs and more prayers for Jess.

 

[susiestar]

While the keppra may be the cause, the neurologist didn't think so. It also could be the elavil they put her on to prevent the migraines. I think many medicines have some of these side effects listed.

The ER doctor said it was more of a tremor, or trembling. WEll, the info on the wemove.org site actually had info on pediatric tremor!

I am going to print it off, as well as info on the elavil (tricyclic AD's are a type of medication that can cause tremor according to the website) and keppra and take them to the doctor's office on Wednesday. Unless they can see me tomorrow, which is highly unlikely - one of the docs we see is double booked most of the day, and the other one we see isn't in until Wednesday. While there are other docs in the practice, and an excellent nurse practitioner, we have been working with these 2 docs on Jessie's back problems and migraines for quite a while. They work well together and don't blow her symptoms off as "hormonal" the way the male docs all do. The guys are OK for an infection, but they just don't cut it for other problems with girls.

Our well is tested yearly, as are the other wells in our area. We have not shown any measurable levels of lead, or of other dangerous substances. But I will have the County Extension Office test it again. They work with the University and are very very good.

I HATE all this. Kids are supposed to run, and play soccer, and gritch about homework and chores and siblings. NOT hurt and be afraid to hold a cup to drink from because they might spill it or walk with-o an arm to lean on because they feel like they are falling.

I didn't get the entire picture from Jess until we were walking around the mall today. If she and I communicated better I would have seen ALL the symptoms, and the degree of them last week. That is frustrating also. She is just so good at hiding things that hurt. And that stinks too.

Anyway, y'all have a good night, I will be on later in the am.

Thanks so much!

 

[Star*]

STOP the ELAVIL.......and go down on the Keppra -

Elavil caused me to have what I call tremors - like that thing in the movie that rippled the ground? That's what my muscles did -

Is she getting enough sodium? Is she possibly Vit. D deficient like you?

Interesting - going to do more research - but the Elavil maybe MIXED with the Keppra is not a good combo for her -

I'm with Small world - I think I'd take a closer look at drug interactions - CALL your pharmacist.....

 

[Star*]

http://www.drugs.com/drug_interactions.php

I input Keppra and Elavil - look what it says....

 

[TerryJ2]

Wow, what a lot you're been through. For everything you rule out, it raises more questions.
I would be looking at medication side effects, too. I'm glad you're printing out things to show to and discuss with-the doctors.
I'm really glad you persisted and got the workup done.
Poor thing. I hope you get to the bottom of this.

Everywoman, gosh, Jana is really going through a lot with-her surgeries. She IS a trooper!

 

[hearts and roses]

I'm glad they ruled out some things, but sure wish they'd figure it out. the first thing I thought of was when easy child was about 10 years old and had cerebellitis - swelling of the cerebellum - it throws off all gross motor skills. But a c-scan would show some of the swelling and Jess's didn't. So good.

I wanted to just tell you that back when difficult child was on medications and we were trying Lamictal, she began having horrible gait problems, incredible tremors, couldn't walk without falling down, strong headaches and even some drooling. When I called the psychiatrist she refused to even consider that it was the lamictal because difficult child was only on the starter dose and had only been on it for 5 days. She suggested that perhaps difficult child had an inner ear infection. When I took her to the allergist, he pulled out his drug reference book and read aloud to me the *possible* side effects of lamictal. Elevene percent of people who took lamictal had difficult child's symptoms, yet when a DR considers any drug, they usually overlook many of the side effects that aren't A) incredibly life threatening, and B) that occur in less than 25% of patients.

I strongly urge you to go back on her dosage of that medication and just see.

 

[Star*]

I think I'm on to something -

B5 or Pantothenic Acid - check out what a lack of it in a body can cause -
tremors.....

I'll keep looking.

IS she ON a good (REALLY GOOD) multi vitamin?