[DeNaJa]

My daughter has just turned 2. Since she has been 6 months old, I have noticed physical delays in her development. She didn't start to "commando crawl" till 12 months. She has recently learned to stand with assistance and cruise the furniture, but cannot stand alone or walk. Our ex-pediatrician FINALLY let us get her evaluated at 12 months and we learned she was physically functioning at the level of a 6 month old. She is strong as an ox, but has low muscle tone. She has many issues with gross and fine motor skills, sensory issues (she requires more stimulation...not gentle touch)...much of her sensory involves oral...wanting to stuff her mouth, blow raspberries, etc... She is also significantly behind in her speech. I have tried some simple sign language, but with the fine motor issues, she cannot really make the signs. She has a lack of good control of her motions. I have had her in PT and OT for over a year and we have added speech. I was a Communications major, so I have worked to my ability to help her with her vocabulary. In over a year, she has physically progressed 4 months (now functioning at a 10 month level). This is obviously frustrating for her to be 2 and unable to do what she wants and express herself, communicate, etc... She is also getting very heavy for me because she has the appetite of a 2 year old, but the mobility of a 9-10 month old...she simply is NOT burning off the calories. This cannot help her walking! But she is not off the charts or anything. We have had her to various hospitals for testing and her genetics work up all came back normal (thank the Lord). In fact, so far, they have not been able to diagnose her. She doesn't seem to have any mental delays. She is a smart, social, loving little girl who just cannot physically do and say what she wants...YET! I have been working with her and she has therapies for an hour a day twice a week and we are adding a home visit ASAP. I am doing everything I have been taught and told to do and she is making progress. I would just like to know what this is...I want to know if we are missing something. Who knows if this is having internal effects that are not as obvious as the stuff we see. She has been on laxatives for a year because without them, she doesn't go. I want to know WHY she doesn't go without them. I am hoping the new pediatrician will be more on top of this and help us find the answers. Does any of this sound familier? Any suggestions? Next steps? I just want to help my daughter and eliviate her frustration. I want her to walk, run, talk, and play with the other kids. She seems so much younger than the other kids her age...like a baby. They tend to ignore her since she cannot really participate. It makes me sad for her.

Thank you.

[plgorzell]

Saw you post.

We were in the same situation. Our daughter was diagnosed with very mild CP in the lower extremities. Not saying that you daughter has this or any other type of diagnosis.....but have you had your daughter evaluated by a developmental pediatrician? Or a pediatric orthopedist? We did both to finally come up with a more solid diagnosis.

Pam

[DeNaJa]

Thanks for posting Pam. We are searching for a diagnosis and have been for a while. Basically, she has seen a pediatric genetics doctor and has been to a clinic for Developmental Disabilities. She has been working with verious therapists for over a year and recently went to a pediatric GI doctor for a possibly related issue of needing help going potty. We basically go where the pediatrician says and aske to be sent to places she hasn't yet suggested. So far, nothing. Genetics were all normal. Everyone says "we don't know...see you in a year to re-evaluate". She is scheduled for a brain MRI as well. We are just holding her up in prayer that this will all work out to His glory. I'll keep you updated. So far, they have not said CP, but neither have they ruled it out specifically. It is still a waiting game at this point. Don't you wish kids had a tag telling you this stuff?

[rindava]

they think her congnitive ability is in the normal range at least. from what I know as a sped teacher who has worked with children with physical impairments, chronic constipation is very common in children and adults with limited mobility...apparently walking keeps things moving in the digestive system...

Keep doing what you are doing and remember that your child can get school based services started at age 2or 3 and up, but private is usually better...

Specifically is does sound like mild CP to me, but I am just a SpEd teacher...

[frida_94601]

Hello, my name is Lillian, when I read your message it reminded me alot of my daughter, I had the same struggles with her. It was around the time she was 1yrs old ,when I was really fed up with my pediatricans recomnedation that some children develop at different stages in life, but as a mother I knew something was wrong, I had my child diognosed with mild CP, followed by genetic test, ot, speech therapy. The one test that made the diagnosis final was an MRI. My daighter is now 11yrs old. I love her to death, we have are struglles developmentally but she has over come so much, she is smart, bilingual, signs and is loved by many that come in contact with her, I came to realize long time ago, to cherish all the moments that may come, and go, for oyur child is forever yours beutiful inside and out, why must we rush the process, by blessed with everthing that your child can accomplish this moment right here right now...in my prayers.

Lillian

[DeNaJa]

Thanks so much. We are having the MRI next week. The 1st attempt failed due to weak sedatives. My DH said it was like giving a mouse tranquilizer to a rhinosarous! So, we are having to use IV sedation. All the tests so far have come back normal. While we are always happy to get a "normal" we struggle with "WHY?"...cause??? She has started to walk more! JOY! She is doing some signing and trying to communicate.

[tmjbstark]

My daughter had a similiar history with the delayed physical things, bathroom problems, etc. She was diagnosed with mild cerebral palsy as well. She is 10 now and you would never know if I didn't tell you. You would just think she is a little clumsy. Sometimes things seem scary at first but work out in the end. Hope all turns out well!

[frida_94601]

I have to agree with you, its an absulute joy to see how far your child has come along, please keep me posted!!!

Lillian

[DeNaJa]

My daughter has started walking...PRAISE GOD! We are thrilled! SHe had the MRI on Friday, still trying for a diagnosis of her delays. But now, she is having seizures. She has had 3 that we know of. The 1st was around Thanksgiving in the middle of the night. THe second was last night and the thrid this morning. They begin with an animalistic set of cries and I found her face down and rigid. She goes stiff and her hands ball up into fists that turn in. Her feet turn in also. She looks "glazed" and cannot focus...her eyes are probably the scariest part because she doesn't recognize us and her "sparkle" is gone. She drools and shakes too. I am hoping the MRI shows something. I just do not know what to do. This is scary and I want so badly to help my baby and I feel powerless! Are seizures common with CP? Do they go away? Do they require medication? We had a dog with epilepsy, so we recognized the seizure and talked her through it calmly, but we don't know how to keep her safe...especially her tongue, while having one. She bites down. I tried to put something between her teeth last night because she was biting her tongue. Any suggestions are most appreciated...as are all prayers. Thank you.

[plgorzell]

Hello,

Pam here again.

No, our daughter has not had any seizures. Did the neurologist suggest an EEG? When our daughter had her MRI, we asked about the EEG and the doctor told us that she was not symptomatic for seizures. In your case, this may help answers some questions.

Hope that things settle down for you and that you get the help you need for your daughter.

Pam

[DeNaJa]

Hi Pam. Well, after the 2 seizures yesterday, we got ahold of her doctor. She told us the MRI was normal and suggested getting an EEG. Today at 8:15am, she had a seizure. Another at 9:40am. A 3rd at 12:15pm and a 4th as my husband arrived with her at a hospital that is over 2 hours away. Her pediatrician saw her this afternoon and made the appt. at the hospital for the EEG and to see the neurologist. We were told that having so many seizures in such a short time put her at risk of having a major seizure that would require meds to stop. It was best to get her into the hospital and tested ASAP...which is fine with me! Better than dragging all these tests and meetings with specialists out for weeks. This is scary. At least with PT, OT, and speech, I can do something and it can be made fun...play time! But I am powerless here! And there is nothing fun about this. I hate this! I hate that this is happening to my baby and I cannot fix this for her!

[AwaitingBeloved]

Oh, DeNaja,
I am so sorry to hear about this. It must be very terrifying and so painful to watch.

The good thing (I think??) is I don't believe that people have pain when they have seizures. At least not the people I know who have them. And I have a couple of relatives that do. So although it is terrifying for people witnessing them, hopefully she's not hurting physically. Also, some of our friends who have seizures and one of my cousins, can recognize that they are going to have one before it comes and sort of prepare for it. By isolating themselves in lying down in the middle of an open floor.

I have cared for patients with CP who also had seizure disorders. I don't think it's necessarily part of CP, but could coexist, or as you said, exist on it's own in the form of epilepsy.

I hope the MRI gives you answers and your Dr. is able to come up with a treatment plan quickly. I am so sorry for this trauma you're going through. Nobody wants to see something so traumatic. Even for me, when I was in nursing school (and after many years of working at a nursing home) I was still very upset and anxious every time I witnessed a seizure. And they weren't my child. So I am so sorry you're going through this and will pray for you and your child.

[bjhv5]

Denaja,

I am s sorry for what you and your family are going through.I know how hard it is when your child is suffering and you do not know why or what to do for them .
I hate to suggest this to you ,but have your doc test for BAtten Disease I pray that is not it,it is not good.But some of the symptoms are failer to reach mile stones,seizures,but there are also blindness that occurs later as well as mental regression but that also comes later.
I only suggest this one to rule it out and 2 because we searched for 2 years before my 2 bio children were given this diagnosis.It was the hardest thing I had heard .
If you want to read more about it to see if you think you should test go to www.bdsra.org
I have to warn you it is terminal and we have lost our son to this and our daughter is doing soso.
I will keep your family in our prayers and pray it is not battens.

[DeNaJa]

How heartbreaking! I can only imagine how it must feel to find out your children have a terminal illness...not just one child, but 2! And to have already lost a son and to know your daughter is not doing well. I am so sorry you are going through this. I whispered a prayer for you and your family that God gives you abundant strength and comfort. I know people have survived the loss of a child for centuries, but as a mother, the thought terrifies me. I know in my head I would go on, but my heart just clenches and I cannot imagine how. I know God would get me through, but I hope I am never tested. I know that those who pass away have gone to a place without pain...a place far better than anything I can even imagine, but the mother in me...the selfish part wants those I love where I am...ESPECIALLY my children. When my grandma passed away, I was glad she was finally free from the pain of her cancer, but I miss her so much. When I think about what was best for HER, I know that God's timing was perfect. I, on the other hand, would have preferred she stick around...and never get cancer at all. I guess my biggest concellation is that I loved her the best I could as long as I could...as long as I had her with me...and I WILL see her again. I can only imagine what you are feeling knowing that your daughter has an illness that is terminal. You must just hug her all the time. I think I am going to go hug all my kids and focus on my blessings. My daughter is such a miracle in so many ways and a HUGE blessing. I will do whatever I can to help her and what I cannot do, I will just have to leave up to the One who can.

Thanks for your prayers. Ditto!!!