Advice/Help

[lilliepad]

Hello, I am new and hoping people who have been through the process can give me some advice on what I need to ask our pediatrician for.

 

I have a 3 year old who approximetly 6 months ago started having issues. We have always had issues with her going to sleep, she has never slept well unless she is with us. It was a bit of struggle to get her to go to sleep, sometimes several hours of me telling her to quit playing, but she would eventually fall asleep. I am not really sure when the change happened but it started to become more and more difficult. Then I noticed she was picking her nails. My husband bites his nails so I chalked it up to being some hereditary thing, and the fact that that she no longer had her binky. The nail picking got so bad that her fingers were bleeding. Then she started getting really upset at bedtime, like in a panic crying and picking her nails. On those nights I knew I would not get her to sleep alone. Then she refused to take baths. She became obsessed that she ,anything really, would go down the drain. I can only get her to take a shower in our shower, which is just a shower, if it is a tub/shower combo she won't do it. I can't have her in the bathroom when helping my 5 year old take a shower because she gets in a panic if her sister gets too close to the drain. Not soon after,` while vacuuming the belt broke and it started smoking. After that if I attempted to vacuum, say the word vacuum, or even touch the vacuum she would get hysterical. Certain noises scare her and I often see her covering her ears.

Around this time she found one of her old binkies. She hadn't been feeling well and it seemed to calm her so we just let her keep it. I noticed she wasn't picking her nails as much with it either. Unfortunately along with the binky she started needing my armpit again (she did it when she was being breast fed) She likes to put her hand(s) in my armpit(s) she strokes/pinches the skin. At first it was only when she wanted to go to sleep, but it has now become an all day thing. She will play/be hyper run to me for my armpit, play, armpit. It is all day long. I can't go to the restroom without her being there with her hand in my armpit. She has gone as far as to get a stool and stand there with her hand in my armpit while I am cooking dinner.

 

She is my 4th child, so I know what to expect in the toddler years, I know they have tantrums but hers are so much more. If you say one thing she doesn't like she is throwing things, and she has really good aim. It seems to be escalating as of late. She tells me at least 10 times a day she hates me/your the worst mom ever/your a brat. She hits me all the time. Lately she has these episodes of just pure rage. She can't control her self and she is so angry and frustrated, but what upsets me the most is after she finally calms down she will tell me how sorry she is "I'm so sorry momma" and I know it is scaring her as well because she has asked me why she gets so mad.

The last couple of months she has stopped eating things she use to eat. It's to the point right now I can only get her to eat bagels, hot dogs, sometimes noodles and cereal, and of course sugar. She has never eaten vegetables (I have given them to her every time we have them knowing it takes time, but she will not eat them) and she would only eat apples, but she won't even eat them anymore.

 

She also has started an obsession with watching Monster University and Monster Inc. We watch them at least twice a day.

I took her to the pediatrician towards the end of January. She thinks she might have a Sensory Processing disorder and has refered us to a clinic run by the University Clinic (I hadn't heard of PANDAS at that time) the wait list for the clinic is long and we won't be seen until May or June. Lately she has been escilating so I have been doing some research and that's when I found PANDAS. I called the Dr. today to see if she would consider looking into it. I just don't know what tests I need to ask for.

 

I am not sure if this would help, but when my now 14 year old was 3 he had strep several times. Then when he was 5 he was really sick and they did some blood work and found his Alkaline Phosphotate was 600% higher than normal and he had an enlarged spleen. They think it was the Epstein Barr virus that did it. From the ages of 6-10 we had problems with his behavior so much so that one point they thought he might have Asperger's. Luckily now he is doing well. My now 5 year old daughter also had really high Alkaline Phosphotate when she was 4, they contributed it to Mono. Could one of the other kids be making my 3 year old sick without her having symptoms?

 

******update**** Just got call from pediatrician office. Their answer was without a confirmed case of strep it can not be PANDAS. They are sending me a handout. I am to highlight the behaviors my daughter is exhibiting and then give it to the clinic when we finally get seen. I just called a Dr. office of a doctor I found on a PANDAS website. I am hoping they can give me some answers, but as I am still learning about it I don't know what I should be asking for.

 

Thank you for reading this long post and any advice you can give me.

[Chemar]

Hi lilliepad

 

I am just bumping your post up so that others here can respond.

[ktdommer]

Welcome,

I am a new member also. I feel your pain. So many unknowns in the beginning. You are really going through a lot. I would think that PANS testing is warranted. I had our Lyme doc write the orders for the Cunningham panel. Information at Moleculara Labs. I will tell you they are running behind.

Your doc should know that strep is not the only trigger. Maybe you could give them information on PANS.

Are you healthy?

Have you asked to get on a cancellation list?

Best wishes,

Kari

[lilliepad]

Thank you for responding. I am relatively healthy. Under a lot of stress, so I am not sleeping well. I have ADD but as far as I know that is all that is wrong. The Dr. I found on the PANDAS site isn't taking new patients but they did give me another name of a doctor here in town to try. So I will try calling them tomorrow. I did a little more reading last night about the PANS. I will also call the clinic and see if they have a canellation list, thank you for suggesting that. Thanks again.

[dasu]

My daughters doctor gave us a printout on PANDAS after suspecting it. The information it contained was wrong, but at least the doctor set us out to find a good specialist.

 

You are the parent, you know your kids and know best what's wrong. From your description she is showing OCD, emotional lability, loss of appetite and regression. I've seen the same thing in our PANDAS kids. And what are the options? Psych meds to mask problems or actual treatment? One start in the Moleculera panel, but there are also doctors who try abx or steroids and if there are positive effects, you know you are on to something.

[ibcdbwc]

A basic work up is certainly in order. You should ask for your child and siblings to be screened for strep via swab and blood work. However, as said, PANDAS is strep triggered but PANS is anything. Mycoplasma, viruses like the ones you mentioned and a host of others, and lyme all seem to be big players. There are also allergies, environmental and food, to think about. You may wish to screen for autoimmune markers as well. I would request a full screening/panel of bloodwork to get started and go from there. Know that you are not alone. There are so many of us dealing with exhausting situations. This forum can be a lifesaver. Please keep us updated.

Edited April 3, 2014 by ibcdbwc

[qannie47]

The good news is that you are not writing off red flag behavior and waiting for her to outgrow it. Maybe she will, but does not make sense on taking a chance when there is so much that has been learned about behavior and correlations to diet, disease, gut issues, gluten issues, methylation issues, tic born infections etc....

 

When reading your post, you have a situation that could indeed be anything, or a combination of the above. Remember, there are many labels like Sensory Disorder, ADHD, etc. We have all learned here in this forum that while these types of disorders are legit, the most important thing is to find the "root cause". Not for the faint of heart, but doable....

 

This can take time. A lot of time. Would your doc humor you and at least start with a strep titers test for example? See if she has had strep in the past? Remember, many Pandas children are Asymptomatic, so a blood test can sometimes tell a different story. I would start with asking him as well to run some basic blood panels to get a comprehensive peak at her....

 

I also would suggest that you not jump to Pandas....it could cloud your perspective. Rather then trying to prove a certain disorder at this point, I would start with just letting the tests/blood results come in and go from there. Let some of that tell the story.

 

Sensory issues, my son is Hyper-Sensory...your description fits the bill. But again, maybe it is maybe it isn't....get the evaluation.

 

You have your work cut out for you....but you will do it, and eventually find answers that make sense to you. If your doc is not willing to venture down a "search and discovery" approach to your daughter, I highly suggest you find one that will.

 

I currently am a big fan of Dr. James Greenblatt, out of MA. He has a website and some very interesting published articles that talk about the relationship between mood/metabolic issues/gut/nutrition....just to name a few

 

Good Luck!

[qannie47]

Some other suggestions.

 

If I had it to do all over again...I would have sat down with chosen doc and come up with a comprehensive set of tests you want to run. You little one is only 3. Get your quantitative set of blood work that you want to run, and do as much of it in one shot. That way you are not dragging her to the doc over and over and poking her. That alone is enough to make anybody unravel. Plus, a Big Picture snapshot will be great.

 

Start slow with chosen supplements. One at a time. Again, I made the mistake of loading my son up with too many to fast and then I did not know what was working and what wasn't. Give each supplement several weeks before you decide if there is any benefit or is problematic. Unless you see an instant highly negative reaction.

 

Test ideas: Strep titers, Cunningham's panel, 23&ME, "The OATS test", Lyme & co-infections, autoimmune work up, blood panel. These tests, for starters, will tell you a lot about nutritional deficits, methylation issues, gut issues, neurotransmitter imbalances, active infections...

 

I am sure others will chime in with other suggestions as well.

[lilliepad]

Thank you for all the really great info.

 

One of the things that has made me think it was PANDAS was when I give her motrin she send to relax much quicker. For instance I did it last night and she fell asleep around 9, she normally won't fall asleep until 11 or later. She woke at 6:15 in a good mood.

 

I'm hoping to get a chance this weekend to sit down and go through this forum. I'm making a list of the things to go over with the doctors.

 

Thank you again.

[lilliepad]

Has anyone else heard of this Epstein Barr drops by Professional Complementary Health Formulas?

 

Last week at my Chiropractic appointment I was filling him in on what was going on with my daughter. He ended up testing her with these Epstein Barr drops and it was a positive. We gave her 5 drops at the office and that night she actually ate most of her dinner. I gave her drops again that night and the following day. She ate sandwich meat, cheese and a yogurt for lunch I was so amazed. She seems calmer although she still is needing my armpit and has some tantrums, but they are much more controlable. I am cautiously optimistic that they are helping her.

 

I also am wondering as we live where there is really bad pollen, could allergies aggrevaite her symptoms? She has had a runny nose the last 2 days and while she still is eating, she is a bit more angry.