New symptoms here- bedwetting/ daytime wetting/ all carb diet

[pixiesmommy]

Just found out that she has been wetting during the day and hiding it, as well as wetting a few times at night. I knew about two of the daytime wets, but they were throughout the summer and thought she was just busy and didn't make it in time. I had no idea it was so frequent!! She has a shoulder spasm from the Abilify and I thought it may be related to that (spasm), but the psych doesn't seem to think so. Ped ruled out infection and said he thinks it is time to see the neuro again and that it is either related to the illness (which they are calling Bipolar; we don't have a PANDAS dx yet) or related to the meds, or otherwise. If neuro turns up nothing, then he wants us at a urologist and maybe some sort of OT for her to re-learn the sensation of having to urinate. Apparently she is not feeling the urge to go. In fact, when we went to give the specimen at the ped, I asked if she had to go and she said not at all, then overflowed the cup++ so something is going on!!

 

Also, on top of that, she is refusing to eat anything but carbs. The ped and psych both think it's "classic Bi-polar" and the psych told me to re-read The Bipolar Child, but didn't otherwise seem concerned. This is in conjunction with her ongoing refusal to drink unless we practically force her. No one seems overly concerned, but food and water feel like a full-time job now. It seems her headaches have also increased since the dietary change and she's definitely seeming to "crash" energy-wise more often as well. I'm trying to hide protein anywhere I can, but she picks everything apart and will leave any protein and just eat the carbs. She's also complaining she's hungry constantly. Despite this, she is gaining weight and the ped says she is right where she needs to be on the growth curve, still a tiny 25% for weight and height, but she has gained 12 lbs in a year and most of that in the past 3 months. Her waist has literally DOUBLED in size. She does not even look like the same child. It is the biggest growth spurt she has ever had, and maybe it is perfectly normal, but it seems odd to me. Of course, the Abilify since Dec and almost 2 months of Prozac could also factor in. She doesn't seem obsessed with her weight, which is good, but she is very sneaky and I have to watch closely so as not to overlook something. I'm terribly worried about eating disorders with her for some reason- just a gut feeling.

 

ETA- she is 9 yrs old

 

Anyone have experience with either of these things?? I am increasingly in the dark!!

[ShaesMom]

Hi Pixiesmommy,

 

My dd7 started wetting herself during the day this summer as well. She was also doing it at night time as well. She has not had a nighttime accident since she was 18 months old and never has had a daytime accident.

 

She also would try to hide her dirty underpants. I only caught on to it because one morning I noticed she was wearing different pajama bottoms than what she had on at bedtime. I ran across the dirty daytime clothes buried in her dirty laundry basket. I immediately had her tested for a UTI but it was negative. She couldn't explain to me why she started having accidents. I never became angry with her over this because I had a feeling it was uncontrolled.

 

She has had years of chronic constipation and has told me that her brain does not tell her when it is time to go or that she can't feel it. So, I just assumed it must be something similar with the wetting.

 

During this time frame I noticed she would come in the kitchen and ask me for something sugary to eat. I've never been one to encourage sugary snacks for my kids (in fact she has never drank a soda pop in her life) so I was shocked to hear this request. She has always preferred crackers & chips. I have noticed lately that she no longer turns to crackers for a snack. She had severe eating issues during the height of her Pandas episode.

 

Sorry I can't be of more help--I never did discover why she had this new habit. I don't believe she has had any accidents since she had IVIG.

 

Sam

[dcmom]

My dd had her initial pandas episode this winter, age 5. Urinary issues were initially the most prominent issue. She refused to go to the bathroom, always waited untill it was an emergency and was having a lot of urinary accidents. When she did go, she had to wipe incessently, and never could get the feeling of being "dry". This took over her life (and mine).

 

She also became very restrictive with what she would eat. She lived on pancakes for about 2 weeks.

 

Zithromax, patience, and time (in that order) helped her get over these issues.

 

Hope this helps- good luck.

[thereishope]

First, one of the peds in the practice wanted to write off my son as bipolar. He's not and I have others backing me up. I think a lot of PANDAS kids get that. It's an easy out for diagnosis, but it just leads to the child being medicated for an unknown amount of time. If the child PANDAS symptoms get better naturally over time, the psych will take credit or give the meds credit, not realizing the child is actually better on their own. Do you have a known relationship between an infection (like strep) and behavior changes? Does your psychologist and psychiatrist believe in and treat PANDAS?

 

As for the eating, PANDAS can be responsible for eating problems, like anorexia.When my 5 year old stopped eating I wasn't sure if it was fear of contamination or just something telling him not to eat. But I knew the not eating was a result of PANDAS. I found websites saying it can be the cause of anorexia and realized I had to be very watchful. Now, his eating problem is different than what your daughter is doing. He would eat nothing at all. Once I started to get food back in him, it slowly resolved, but it took a long time. As of prrotein, it comes in a lot of forms, not only meat. Will she eat peanut butter, eggs, cream cheese. I believe low fat cream cheese has a higher amount of protein. Or you can buy pureed meat in a baby jar and mix that in some food. They sell ones that are strictly meat, no veggies included.

 

As for the bathroom problems, I have been fortunate not to have those problems, just bedwettng for awhile. It lasted on and off for a month then just stopped out of nowhere.

[T_Mom]

We finally exhausted all other options and are going ahead with exploring whether or not PANDAS is the right diagnosis. My dd9 is diagnosed with all sorts of things- OCD, ADD, SPD, Bipolar, Tourette's... and yet there is no explanation for the random fevers she has. We've had Kawasaki EKG, immuno bloodwork, urine porphrines, etc etc etc. and no one can tell me what is going on.

 

My DH found this forum and info about PANDAS a few months ago and we called Dr K and set an appt for mid-August to get an evaluation. In my heart of hearts I feel that she does have PANDAS. She's has strep SOOOO many times in her short life. The dr who removed her tonsils when she was 4 said they were some of the biggest and yet most scarred from infection tonsils he had seen in his entire career....

 

So my questions are-

She is on low doses of Abilify and Zoloft for anxiety, tics (not that they help), and aggression (they do lessen to an extent). Can she continue these meds while receiving IVig if that is the course of action we want to take? I see that some drs premed with Benadryl, which reacts with Zoloft according to the prescribing insert they gave us.

 

Manda

 

HI Manda,

I am so glad you found this forum, and that you are seeing Dr. K. next week.

Rereading your posts it strikes me that the symptoms you have seen in your daughter are similar to those reported by parents here. Involuntary movements that appear as tics, and as one doctor (?) referred to them "muscle spasms" (which have included finger flicking, sniffing, blinking, shoulder shrugging) that you have observed ebb and flow. 9 year old bedwetting and having urinary incontinence suddenly, highly gifted child, episodes of apparent severe mood lability and impulse control issues, obsessive food issues (not eating certain foods, etc.), and multiple episodes of strep (scarred tonsils.)

 

You mention she is on Abilify and Prozac (We too tried zoloft/prozac due to doctors recommendations.)

 

I am wondering if you have seen any improvement in your daughter when she is on full strength antibiotics? If you reread old posts, you will see that many parents see a significant decrease in PANDAS/PITAND issues when given antibiotics.

Dr. K. notes on his website that early antibiotic treatment may result in a "cure" essentially. We are on full strength Amoxicillan and have been for a number of months. We decided it was worth a try and that it was certainly relatively benign compared to the alternatives (which for us included a suggested stay on a psych ward.) With the steroid bursts my daughter came back to normal--the antibiotics, we believe, are keeping inflammation down and modulating her immune system, contributing significantly to almost zero symptoms, it appears.

Keep us posted--I hope the appt. next week is insightful--

[pixiesmommy]

 

 

 

I am wondering if you have seen any improvement in your daughter when she is on full strength antibiotics? If you reread old posts, you will see that many parents see a significant decrease in PANDAS/PITAND issues when given antibiotics.

Dr. K. notes on his website that early antibiotic treatment may result in a "cure" essentially. We are on full strength Amoxicillan and have been for a number of months. We decided it was worth a try and that it was certainly relatively benign compared to the alternatives (which for us included a suggested stay on a psych ward.) With the steroid bursts my daughter came back to normal--the antibiotics, we believe, are keeping inflammation down and modulating her immune system, contributing significantly to almost zero symptoms, it appears.

Keep us posted--I hope the appt. next week is insightful--

 

 

She did an outpatient stay for 11 days last summer in the hospital herself, so you aren't alone! She has NOT had a course of antibiotics, and the reason for that is that we can't get any dr to treat her for PANDAS or diagnose it. We have a team that we have assembled otherwise and been very pleased with, including a therapist who does some OT work with her as well, a psychiatrist, a pediatric neurologist who is very experienced and renowned (locally at least) with his work with Tourettes and tic disorders, and our pediatrician. Each of them has heard of PANDAS but claim to not know much beyond the fact that it is a controversial diagnosis. Having said that, they have not been discouraging and the all of them, with the exception of the neuro, are aware that we have the appt with Dr K next week and are anxious to hear what he has to say and seem to be on board with whatever treatment he can provide for her. I particularly trust our ped and always get his opinion on any treatment any other dr suggests for her, as I'm sure I will run Dr K's plan by him before committing to anything.

 

The appt is actually on Wednesday and I am beside myself waiting. We've been struggling for years, each year progressively worse, with very little answers. It feels like moving through mud sometimes to get even the tiniest thing to happen- finding drs who actually hear us, making progress in any way, etc. But suddenly it feels as though things are coming together. I hope that he really can give us some answers, or offer some hope.

 

I certainly am glad I found you all. We have been telling drs for years now that she is not only mentally ill, but it corresponds to her "random, unexplained" fevers and no one has been able to offer us any suggestions. My husband and I spend many hours each week researching for ourselves and luckily one night he came across PANDAS and this board, and in that moment and the weeks that followed as we educated ourselves about it, things finally seemed to fit together.

[colleenrn]

Manda-

Everything you describe is consistent with PANDAS. The large cryptic tonsils, the urinary problems, unexplained fevers, headaches, stomach aches-- all make me think she does have strep somewhere. You said an infection was ruled out? What tests did they do? When was she last on an antibiotic?

You will get answers when you see Dr. K. Good luck!!

 

Colleen

[colleenrn]

Manda,

 

I also wanted to comment (forgot to in last post) about the bipolar diagnosis issue.

 

I firmly believe,for many reasons, that a large majority of children/adolescents who are diagnosed as bipolar, are absolutely MISdiagnosed. They are really PANDAS, BUT misdiagnosed due to lack of knowledge about PANDAS.

 

If you read the list of bipolar symptoms in the book your doc told you to read again (The Bipolar Child), I would say that 95% or more of those symptoms are PANDAS symptoms.

 

Very Common

Separation Anxiety

Rages & Explosive Temper Tantrums (lasting up to several hours)

Marked Irritability

Oppositional Behavior

Frequent Mood Swings

Distractibility

Hyperactivity

Impulsivity

Restlessness/ Fidgetiness

Silliness, Goofiness, Giddiness

Racing Thoughts

Aggressive Behavior

Grandiosity

Carbohydrate Cravings

Risk-Taking Behaviors

Depressed Mood

Lethargy

Low Self-Esteem

Difficulty Getting Up in the Morning

Social Anxiety

Oversensitivity to Emotional or Environmental Triggers

 

Common

Bed-Wetting (especially in boys)

Night Terrors

Rapid or Pressured Speech

Obsessional Behavior

Excessive Daydreaming

Compulsive Behavior

Motor & Vocal Tics

Learning Disabilities

Poor Short-Term Memory

Lack of Organization

Fascination with Gore or Morbid Topics

Hypersexuality

Manipulative Behavior

Bossiness

Lying

Suicidal Thoughts

Destruction of Property

Paranoia

Hallucinations & Delusions

 

Less Common

Migraine Headaches

Bingeing

Self-Mutilating Behaviors

Cruelty to Animals

[EAMom]

Wow Colleen...thanks for that great post. I completely agree with you about PANDAS kids being mis-diagnosed as bipolar. It breaks my heart to think that so many of these kids are going to suffer for years (or a lifetime) due to lack of appropriate treatment (psych. drugs vs. antibiotics/IVIG/Pex) When dd9 was so sick feb/march 08 (before we had any idea what PANDAS was) we often thought she was acting like she was bi-polar. And I see she did indeed have most of the listed symptoms! In fact the only big symptom that she had that was NOT on the list was anorexia nervosa.

 

Manda,

did you already say what town/part of the country you lived in? Maybe someone can rec a local doc. Did you also say that you're doing the Cunningham blood tests? Those results should be interesting. It would be good if you could submit the blood b-4 antibiotics (and esp. b-4 steroids).

[T_Mom]

Wow Colleen...thanks for that great post. I completely agree with you about PANDAS kids being mis-diagnosed as bipolar. It breaks my heart to think that so many of these kids are going to suffer for years (or a lifetime) due to lack of appropriate treatment (psych. drugs vs. antibiotics/IVIG/Pex) When dd9 was so sick feb/march 08 (before we had any idea what PANDAS was) we often thought she was acting like she was bi-polar. And I see she did indeed have most of the listed symptoms! In fact the only big symptom that she had that was NOT on the list was anorexia nervosa.

 

Manda,

did you already say what town/part of the country you lived in? Maybe someone can rec a local doc. Did you also say that you're doing the Cunningham blood tests? Those results should be interesting. It would be good if you could submit the blood b-4 antibiotics (and esp. b-4 steroids).

 

 

Manda,

I agree with EAMom entirely-- Colleen's great post hits the nail on the head for so many of us who have seen severe sudden onset behavioral changes and erratic behaviors...Now when I think back on actually being afraid my d would open the car door, or jump from the high stairs, or some other horrid thing to hurt herself because "something" told her to...AAAAHHHH. and that was less than a year ago.

 

Now, it seems like another life, and it floors me to look back on it. This has got to be holding SO many children captive, who end up being medicated to the hilt mistakenly. It breaks my heart to think about.

 

Get the Cunningham tests done if at all possible prior to steroids. Email or call and they will overnight the box.

 

All the best--TMom

[peglem]

Suppose you broke your leg and when you go to the doctor, instead of an xray, the doctor diagnoses "bruise & swelling syndrome." He advises you that people with this syndrome often have trouble walking and that's to be expected. He gives you some morphine to treat it. That's exactly what's happening with dx's like autism and bipolar....those are just labeling the symptoms and calling it a dx, without seeking an underlying cause. Its not that my daughter is misdiagnosed with autism, just that autism is only labeling her symptoms w/o seeking to find and treat an underlying cause.

[thereishope]

pixiesmommy,

Even though many PANDAS kids do get misdiagnosed w/ bipolar, don't freak out and stop any psych meds on your own. Instead, find a different psychiatrist. If you can't get to any mentioned in this forum, contact pandas network, or do the tedious job of calling psychiatrists and psychologists in your area. I called probably 20 psychologists and a few psychiatrists. You can always leave them a message or request that they be given a message to contact you. It's like a phone interview and you get a feeling of who is willing to help. And it's free. Outright ask them if they know what PANDAS is, if they believe in it, and if they've ever treated patients with it. I even had one child psychiatrist who had to google it when I spoke to them! I had another who said they knew what it was but then made light of the situation with a nervous laugh and poked fun at the PANDAS acronym.Needless to say, I did not send my child to them. Again, the phone calls helped a lot. And, let me add, all but 1 returned my call.

[dcmom]

pixiesmommy- Did you tell us what area you lived? Maybe someone on the forum could recommend doctors helpful with pandas...

[pixiesmommy]

We are near Chicago, IL

 

We have the Cunningham box, but not clear if she is having an episode. It's been a wild week here- DH and I have both had a stomach bug and I have not had as much contact with her as usual to really observe what is going on. We will definitely do the bloodwork before any treatment, whether it be steroid or antibiotic.

 

Our psych has heard of PANDAS and was interested in learning more from Dr K and wrote his name down to look at his site. He specifically said, "I hope I can learn from him," and was supportive of our visit.

 

We are to call the psych on Friday. Dr K is on Wed. We'll discuss meds with him and where to go from here. Currently she is on 3 mg Abilify and 25mg Benadryl at night.

[EAMom]

Wow, that is great that Dr. K. is local for you!